I need to vent. I am going CRAZY.
Everytime I think I have this under control, my body hurts again, or some other problem gets put on top of that. And it's not FAIR. Really. It's not. I don't understand what I f**king did to deserve this.
I'm being a baby right now. Underneath it all somewhere I know its not about deserving and not deserving, but I can't take this. I wake up in the morning and I cant even look at myself in the mirror, my body hurts, my hair is falling out, I dont look good, feel good, I have nothing I can hold on to right now thats going good for me.
I feel like i lost my future when I got diagnosed. I wanted to teach yoga. Now I cant even do it, I havent been able to in MONTHS. That was what i had going for me. I'm just completely, completely, sad. I'm just sad. I hate that I have to wake up every morning and deal with the same problems. Mtx isnt totally working, and mtx makes me feel like sh*t, too.
Everytime I try to get my life back on track or fix one of those problems, something else goes wrong and something else gets put in front of me. How much sh*t am i supposed to overcome? I'm 16, i'm PISSED OFF that I cant be a f**king 16 yr old. I feel like i'm going to lose my youth, and waste it with hurting, and being sad, and not feeling good. I try so hard to keep a positive attitude, but then nothing gets better, and nothing changes.
I dont understand why this is happening to me.What did i DO? I'm a GOOD person and I try soooo hard every day and I still hurt. I still get punished. Thats what it feels like atleast.
I don't know, i'm just tired. and i'm sick of being tired. and i'm sick of being sick. And I just want my old body back. I want my old hopeful, positive, attitude back BEFORE i got sick. I want to be able to hang out with my best friend. and sleepover. and keep up with her. and not be afraid of throwing up at her house. or having my body kick out on me in the middle of a night out.I want it all back.
i dont understand how this is my life now. i dont know how it got like this. how this is it now. iwas FINE before. FINE. and it all happened so quickly, and not fast enough. and this is what i have now.
ugh.vent over.happy holidays
Im soooo sorry that you are having to deal w/ this and being 16 at the same time. What other meds are you on? Are you able to talk to your RD about adding Humira or Enbrel into the mix? Im not sure if they prescribe those to JRA'ers or not but it might be worth asking. Also, have you tried the injection MTX? It doesnt have as bad of side effects as the pills do.
Hang in there sweetie....
I know you can't think that disease only happens to bad people who "deserve" it. Try not to get to preoccupied with the "why" of it. You'll know when you know, or you may never know. The important thing is that you become the best you can be in spite of the obstacles.
I don't think I'm the best pep talker, but I do think that your life isn't over because of RA. And I think when yopu look back on it, you will find that it made you stronger and more determined. And in an odd way, you might be thankful for it. ok, that might be pushing it, but their is very ofte a lot of good that comes from hardship. I hope you'll find it. Merry Christmas
i just hate needles. ugh.
First of all, you're allowed to be angry. You wouldn't be normal if you weren't angry. I was also diagnosed at 16 and I felt robbed of the best of my teens. I went to prom with a cane. But trust me, things will get better. Sometimes it takes time to find the right combo of meds, the right doctor, the right exercise routine, but it will happen, and you'll most likely get your life back. It may never be exactly what it was, but it will be something. I'm a high school teacher now, which I never thought I would be able to do in the beginning when I could barely walk. It's a challenge, and it isn't fair, but you will be ok, and you will feel good again. What Amber said. I can not top that. Everything she said i agree with. Just want to send a hug your way. And god speed in getting on the right meds. You can be angry and cry today. But you will probably be doing yoga again soon.I certainly agree with what others have said about giving yourself some time to be angry and expressing those feelings any way you can. It's much better to let it out than to hold it inside. A few words of encouragement: after six years now with this disease I am functioning a lot better than I was the first year. Finding the right medication can be frustratingly slow but marvelously effective. You mentioned yoga. I do an hour of yoga each day now and it really helps me feel better physically and emotionally...even spirtually. I was reading about a Tai Chi class that's given at a local hospital here for patients with physical disabilities. Yoga can also be a wonderful form of physical therapy for people with RA...and a teacher who can truly empathize with the struggles and limitations of people with RA would be an extraordinarily valuable asset. Maybe some day that teacher will be you! Don't give up...you have enormous potential and this disease can make you stronger.
Alan
I am so sorry that you are having to deal with all this. I only wanted to add one comment. Although I am still on MTX(only.4cc), I really believe that MTX does not agree with some people. I have ALWAYS felt sick on it (even with the injectable) and although the day or two after injection day are the worse, I still not feel 100% after that. I know it is the MTX because it is a very distinct feeling and I have not felt that when I have had to go off the MTX for a week or two for various reasons. That yucky feeling also came with a feeling of sadness. Right now I have been off the MTX for 2 1/2 weeks do to HORRIBLE mouth sores(some as long as an inch long). I have been on MTX for about 3 years now and I am really close to saying no more. (I do know that it is very beneficial in alot of ways). My point is that maybe the MTX is just not the right drug for you. I am also on Arava and Plaquenil and have had no problems with these.
So, hang in there. It does take awhile to get these meds sorted out. Fortunately, there are options and I know you will find something that is right for you. My heart goes out to you.
thanks everyone. It's difficult really to know when its ok to complain and feel horrible, and when to shut up, and to pretend youre fine.
Ive only even told my two best friends about RA. So everytime i'm out and I hurt, i just wince and keep moving. But I don't want to use it as an excuse or talk about it too much with my two best friends. But so often i've had to say no I can't hang out because of RA or no I cant sleep over RA I cant do this RA i dont feel good RA.
even with family. My dads huge into no special treatment just because youre sick. And i like that. It makes it like im not different from the family. but at the same time sometimes i DO need special treatment because i CANT do everything everyone else can do.
its such a weird balance i'm trying to find. When to suck it up and know, it can be worse, and when to allow myself tofeel horrible, and admit it.So its kinda a relief to complain to people who know how it hurts.
You know, every time I see one of these types of posts, I want to scream. Just scream and scream until I'm hoarse. You did nothing to deserve this just like if you got a cold. No, it wasn't because you went out with a wet head in the cold, or because you wore wet socks or whatever lamebrained excuse people use because they got a cold. You were run down and your body couldn't fight this off. It's as simple as that.
Underneath posts like this are "God" thoughts - maybe not quite articulated or said straight forward, but there just the same. Comments on being 'good' and 'not deserving this' and a host of others. God/your higher power/ etc. does not do this to us. It happens. And you can read books like "When Bad Things Happen to Good People" until your eyes roll back in your head but except for taking it as inspiration they won't help you much right now.
Alan and others are right - you will look back some day and be greatful for the growth you'll have experienced from this, even if it's just emotional or spiritual or maybe in just understanding others better. It's freaky, but true.
And you have a right to be angry. You're 16 for Goodness sake! I was furious and I'm waaaaaay older than you. I had a future mapped out that I wanted more than anything that included tea parties on the floor and camping in the woods and sleeping out in tents and Girl Scouts and a host of things you do with a 5 year old that you can't do when you can't even walk let alone get down on the floor. Nor did I want my illness taking away from her in anyway. She's too young to be worrying about Mom. She needed a Mom that could play and hug and run to play tag or whatever.
Figure out what you want to do about the meds. Biologics? Antibiotics? Diet changes? Alternative meds? Whatever. Learn and listen to your body. Get your life back in the way you want it. Fight to keep your future. And when you've wrestled this RA to the ground - go back to school and maybe get a degree, or whatever, and use the emotional growth and the knowledge you've gained about this disease and maybe you can help others.
God helps those who help themselves.
Pip
You are allowed to feel sad and angry and frustration just builds from that. MOst of us here have been there, me included; a lifetime of it.
I have no great words of wisdom but many here have posted great thoughts and advise with immense insight and sometimes that is what is needed at this time in your life. A good old fashioned hug often works wonders as well.
THis is a horrible disease, slowly taking away from your life and only sometimes adding to it or giving you some relief. It is not fair at all, never has been, never will be.
THe one thing you have going for you though is the new meds that have proven some promise in help with this disease which is more than we had many years ago. Also, the internet to educate and support like this AI board. You leanr that many have this disease and many have the same feelings and frustrations that you have written in this post. It is so very sad. It is so ver scary and it really does breed anger in us but that does pass. THe anger about this disease comes and goes and you get to go through all the lifestyle changes and illness, but!, you are not alone in this battle to to exist in a world full of RA and all that comes with it.
We are here, not going anywhere anytime soon. Vent away, sometimes when a person vents on here it actually helps others. IT reminds us all of this battle that we have and must endure because the other options are not acceptable.
It sure helps me when I feel really sick and just cannot see past the pain but just cannot muster up the gumption to complain to anyone out loud.
Hugs,
Jode
Great post, Pip. I agree 100 percent. For the most part, I now have my life back because of the research that *I* did, because *I* questioned my doctor's decisions, because *I* was not afraid to speak up and say, "No. What you are telling me to do IS NOT WORKING."When FIRST got diagnosed. I went out. I got book after book on autoimmune diseases on RA, I got a journal to write down what exactly is happening to my body, to write down terms used and hot and cold heating pads and foods that can help. Everything.
It gave me something to put my time and energy into. I was obsessed with learning as much as I could about my body, so I can do as much as I can to get better as fast as I can.
It's like I get tricked though. I have many bad days, and when I have a good day, I think it will all change. Yes. I am feeling better.I'm hopeful again. Then I wake up the next day and it's like a slap in the face. Or, no, I can deal with a slap in the face, its like a milion stabs to the heart. Ohhhh you thought things would get better didnt you, nope, hahah, wrong. When that keeps happening it's HARD to be hopeful that things will change.
Dealing with RA on TOP of other problems, it's over whelming.I've been thrown life changing experiences after life changing experience since I was young. When do I get a BREAK? When do I get to be happy? How many phone calls did I get almost last year telling me how 16 is a great year? Ugh. I don't know how i'm doing this. I dont want to anymore. I just dont.
let me think. ok. For christmas I want a brandnew life, haha. Thats what I want. Or a day of someone elses.
Hey, all of us have tons of crap thrown at us every day! I put my son and myself on the specific carbohydrate diet, where we cook everything from scratch.
thanks. Ya, i'm trying to get out of being depressed, haha. I just really needed to vent.
I feel like sh*t, even just for feeling like sh*t. Because I know it can be worse. It's a bad cycle.
I'm going to get a physical therapist though. i'm excited about that, because I really want to be able to MOVE, atleast just more then plain walking. which is still better then where i started from.
I want to try a new diet, even though my mom happens to be a nutrionist, so most everythign in our house is all natural/organic. But, ok. breathe. I have to do this, so I guess i'm doing it.
I like this place, haha. Kind of like when you hear about your grandpa going to war and he has a special bond with his buddies he met there. It's a feeling no one else can sympathize with even if they LOVE you, just because they don't know what hurts, how it hurts, and how it affects everything.
have you noticed how many people DON'T know what RA is? You say RA, and they think, oh, your wrist aches, take an advil. Jesus. I like these personal things to be kept a secret really, because of that.
people should really know more about their bodies, in general.
and pain is deffinetely a great motivator. I KNOW ra helped me in sooo many other ways. But...it's a pain in the ass and i cant deny that. It forces you to grow up, really. But i slip into being depressed, too. Its hard.
Perspective is different. What I used to complain about, i deffinetely do NOT anymore.
Thumbelina,
I can't add much more to the advice and ideas u have been given. "Arthur" is a sneaky enemy; we just have to gather as much knowledge as possible to fight the brute. MTX and Celebrex have helped me; it doesn't suit some people and they have had more luck with other meds. "Normals" most of the time just don't get it - and the worst bit is that especially in the early years we look as if nothing is wrong with us. If we had cancer or a broken arm we'd get all the sympathy in the world. I hope you find a combination of meds soon that will suit you. parents? well ... they are probably worried about 'spoiling you' and don't realise that a gentle hug now and then would work wonders. Friends? If they are really and truly your friends, u will soon find out. But I agree, it is rather the pits to get RA at 16. We have one advantage over folk who developed it many years ago - more modern drugs, and please God, some more in the pipeline. In meantime, u can throw a hissy fit in here now and then to let off some steam.
Lorraine
P.S. A quote from one of our members: "You know u have RA when your grandmother, with her bad knees, can make it out to the car before u can!"
I am 50. My daughter is due to have her baby in June and I am so excited about it, especially since I will only be 51. That means I will have more energy and less pain to have fun with my daughter and the baby than if I was 56 or so.
That is what I am thankful for. SOmetimes it is so hard to see beyond that point where you are frustrated and sad and angry..........I think that is part of the """NORMALCY""" of RA.....sad huh?
jode
Thumbelina, I just wanted to say hi and let you know that I am very proud of you for coming to this board and allowing yourself to open up to complete strangers and accept their feedback. This is an awesome group and although RA is the bond that ties us together, I am grateful for having met such a wonderful group of people. I also agree that you have every right to be angry. Being so young and being dealt such a foul hand is very difficult to deal with let alone all the other stuff that comes around at the age of 16. You are a strong woman and you will overcome these obstacles.
As far as drugs, my RD put me on MTX and Enbrel which seem to be working. I also have flexeril and vicodin for days when the pain is more than I can handle. Maybe a combo treatment will work for you as well. Whatever is decided, I hope you find relief soon and are able to get back to your life. PT should be really good for you and I'm glad you're able to participate. RA just adds a little challenge to your day.
Feel free to vent whenever you need to. We know exactly what you are going through and have been there at one time or another. We are here for you. I hope you have a superfantastic and extra comfortable evening. thumbelina-
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i was diagnosed (with AS, not RA) when i was sixteen too. it's been a year
and it still completely f*cking sucks. i take enbrel, so i give myself
injections two times a week. i'm finding myself completely demoralized.
none of my friends understand anything about what it is ... "oh arthritis?
isnt that an old persons problem? and it's not that serious or that painful,
right?" uh. wrong.
as i write this, my elbow and my fingers are killing me. it totally sucks.
advil doesn't work and all of the "pain killers" they have given me in the
past dont seem to work or get me sick. (naproxen made me feel awful
and celebrex seemed to be a waste)
i totally understand what you're saying. this stuff really does force you to
grow up. but still, i really wish i could have had a normal junior year in
high school. i'm still really angry about all of this ... i mean 16?!? what the
f*ck? i don't want to have to worry about my spine fusing together. i
thought the big worry was the SATs. askljsddfg. its completely unfair and
i wish i could scream buuuuuuuuut i cant. i don't think i'd have a voice
left if i tried to scream out all of my frustration and anger ...
i guess when i think of dealing with AS, or RA in your case, i cant help but
feel kind of hopeless. i feel like i'm running while at the same time trying
to tie my shoes. so damn frustrating...it feels impossible. i guess i just
have to keep pushing along ... and so do you! because eventually those
f*cking velcro shoes will come, and all of this bullsh*t will slowly start to
fade away ....
-isa
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