lol that was randomly random.

Maybe you can try getting a boyfriend or something, just some friend and you could always ask if you could hangout there. And if your dad isnt as bad as your mom and sister you should talk to him on the phone, if you dont see him maybe you can just ask him to come and see you, that might cheer you up. Tell him how everything is for you, almost extactly how you just said it up there ^. :)

I can probably explain it better than that.

Here is what I took from it, in my own words:
When your body starts to swell, it is because of Spondylitis. When you are swelled, your body needs to deal with it, which requires energy.

Now bc you have ankylosing spondylitis your body releases cytokines while you are swelling. Now, there seems to be a theory that either A) the actual process of swelling affects many parts of the body. Those parts are responsible for your overall feeling of health. Some of the parts affected causes you to feel sleepy and being anemic. or B) or that the cytokines by themselves cause you to feel sleepy and cause the anemia. So both of those are a part of having ankylosing spondylitis.

Now, with that being said, anemia by itself will make you feel tired. Sometimes treating a symptom can help with another symptom, such as the tiredness. Whatever will help take down the swelling, as long as it’s prescribed, will probably lessen the effects of the anemia. Because the anemia makes you more tired, you will likely feel more well rested.

……..I hope that helped, and didn’t further confuse.

:D

I’ve found a website that I think would be a perfect place for you to hang out in. There are people in the website below of all ages, from all countries, who share your illness. I snoodled ( —- my very own word) around in there a bit and I found lots of info … but even more importantly: it’s filled with people who care and who will treat you with the kindness and caring that you so richly deserve. I included a snippet of content from the site’s homepage to give you an idea of how the people in there relate with each other. Check them out, will ya?

http://www.kickas.org/

The Ankylosing Spondylitis Support Forums

“Have you ever felt like the piece of the puzzle that just didn’t fit? Turn it around every which way, it looks like it should fit, but it just doesn’t. I feel like this all the time. To say that my puzzle piece fits here would be an all too perfect oversimplification of the truth. The truth instead is that we all bring our own puzzle pieces here, and somehow they just work together. Together they create some beautiful mosaic much more colourful and vibrant than the puzzles each of the pieces originally came from.

That’s how I feel here, like I am part of something much bigger than I could ever hope to be or achieve on my own. When I feel weak, I find strength. When I feel sad, I find laughter. When I feel hopeless, I find hope. Thank you for that.”

Annyia, I’m a bit torn about sending this particular reply, because I don’t want you thinking that you’re being “defined” by your illness. Because that is so not the case. I see your sweet face in your picture and read your heartbreaking words, and I know that there is so much more to you than just your illness. You’re such an incredible young lady, Annyia … I wonder if you really know that. I wonder if you are aware that you carry within you incredible strength and awesome courage.

But having done some research on Ankylosing Spondylitis, and in reading your replies, it seems to me that neither your doctor nor any of your family have properly educated you about an illness that you are going to be living with possibly for the rest of your life. And this worries me. Especially since many of the comments you made in your post about constant sleepiness, insomnia and depression are all side effects of Ankylosing Spondylitis. You should know these facts, Annyia … someone should have told you that there is a medical reason for much of what you are feeling.

As you grow older, it’s going to become increasingly important to fully understand your illness, Annyia. As I write this, there are scientists at work making break-through discoveries about it … you will need to be kept aware of the latest developments and newest medications. You’re going to need to know what questions to ask your doctor and you’re going to need to learn how to get your doctor to answer those questions. (Sad fact, but yes, many doctors need to be prodded into giving answers that are understandable and actually make sense.)

I can’t even imagine how over-whelming all of this must seem to you. You’re in a horrific situation at home and you have all of this other medical stuff to deal with. And to top it all off, from what you’ve written here and in other posts, you’re going through all of this all by yourself.

Right here, right now, let’s at least end that part of your loneliness. (See PART TWO)

Meanwhile, while I’m off doing that, I was wondering if you’ve ever made contact with this young lady:

http://www.myspace.com/jra_of_america

Understandable. I’ve read it 5 times and am still trying to get the full picture. But the comments that the people make, describing how it feels … is that what your constant sleepiness feels like?

Fatigue In Ankylosing Spondylitis
As reported in our News Section on November 20, 2006.

“Fatigue has been recognized as one of the major complaints among patients with inflammatory rheumatic diseases.” State Croatian researchers in a recent study.

But what causes fatigue in spondylitis?

Fatigue can be caused by many things related to spondylitis such as loss of sleep because of physical discomfort. But it can also be a by-product of the disease itself.

Spondylitis causes inflammation. When inflammation is present, your body must use energy to deal with it. The release of cytokines(1) during the process of inflammation can produce the sensation of fatigue as well as mild to moderate anemia. Anemia may also contribute to a feeling of tiredness. Treating the inflammation caused by ankylosing spondylitis can assist in decreasing fatigue and anemia. We recommend discussing treatment options with your doctor.

Tip: Fatigue can be a big part of pain. In addition to speaking with your doctor, ask your physical therapist to teach you how to move with efficiency so that you may minimize fatigue and frustration.

The Croatian researchers conclude that, “…the intensity of fatigue should be assessed more frequently in patients with inflammatory rheumatic diseases as a marker of both disease activity and functional ability.”

How does fatigue feel? For our May / June 2004 issue of Spondylitis Plus, we asked our posters on our message board to tell us what the fatigue in ankylosing spondylitis feels like. Here are some of their responses:

“Some days it feels like wanting to blend into the sofa, so that none of my family members will notice that I am there and ask or expect me to do anything.” –Christie, Huntington Beach, CA

“I liken it to wearing a jacket containing 40 pound weights in each pocket, while slogging through a vat of molasses with suction cups glued to the bottom of your shoes.”
–Michael, NY, NY

“No amount of sleep will reduce the fatigue that makes me feel like I’m walking around all day with one of those lead aprons that they use at the dentist’s office for x-ray protection. It feels like when you experienced a BAD case of the flu - pre AS.”
– Tim, Phoenix, AZ

“I lie in bed at night and will myself to move because it hurts so much to actually do it. In addition, when I “wake up” in the morning, if I actually managed to get some sleep, I feel like I haven’t even been in bed. It’s such an overwhelming sense of exhaustion. Arms and legs feel like lead - and there is a sense of failure - even though you know this is not the case.”
– Crystal, Cleveland, OH

(1) Cytokine: A small protein released by cells that has a specific effect on the interactions between cells, on communications between cells or on the behavior of cells. The cytokines includes the interleukins, lymphokines and cell signal molecules, such as tumor necrosis factor and the interferons, which trigger inflammation and respond to infections.

SOURCE:
http://www.spondylitis.org/about/comp…

Are you being treated regularly by a doctor?

and also if that should happen again
tell the doctor you were assaulted - he’ ll document it then

u seem really smart and independent
like moseywosey said you could live alone when you are 16

Sweetie, I want to thoroughly read all of your other posts before I reply to this one. I’m also reading about your condition, Ankylosing Spondylitis.

I will get back to you, Annyia … I promise. Meanwhile, can you tell me if your Dad knows about what you’re going through at home with your 19 yr old sister and your Mom?

I’ll be back in a little while … -Aries.

I do think my mom owes me a better childhood. She was at work all the time, she never knew what books I read, what music I listen to, do I have a girlfriend, what bothers me? We never really spoke actually, it’s like she was AROUND, but never WITH me. I do think my dad owes me something. Not only he never cared about what’s going on in my world, he also was the guy who made decisions about a lot of things in my life, regardless of my own thoughts. You say you learned to look after yourself at a very young age, maybe it’s better than have a life controlled by an authority, than being constantly judged and criticized?

Bottom line — I think you’ll have to develop some other feeling about them, other then resentment. I had to forgive my parents at some point. I took some time to be alone, think about what they did wrong, why they did it (”because they’re BAD” is not the answer, sorry - too simple), to understand and forgive them. You think your parents are BAD and don’t care about you? What do you know about their parents? Maybe your parents act like their parents did, and just don’t know how to be more loving and caring? Please understand that labeling something as “WRONG” does not give you an understanding WHY it isn’t right…

You’re still very young, I’m so sorry that you have to go through such complicated relationships while growing up. You’re not alone, if you think most people had great teenage years, I really doubt it. You sound like a very smart girl, and I hope you’ll soon understand that you can be happy regardless of other people’s problems. Just understand, that you are great, beautiful and smart, and if your mom didn’t tell you this, didn’t show her love for you — it’s her problem, not yours…

Well, my reply is twice longer than your post, hope this helps at least a bit :)

Anyway, I feel sorry that you have such a bad life. Call your dad and ask if you can move in with him. Your step mom might understand and want to help, especially if she is nice like you’ve said. We had both of my steps in my home for MANY years.
good luck

well go out call up old acquantinces but dont let yourself get seperated from the world

bt do u got friends who make ur smile?

have u ever thought of telling ur dad how much it hruts living with ur mom?
since he may change everything for u
[law…. a child may not be ignored by needs, especially in a divorced family]
either hte spouse has to give up the child or the child is found a new home

ur brave enoguh to ignore
but thats not wat u should do
holding pain in is painful
i do it all the time

but i have to get it out and make things right

do what u think is right
let it all out… and see light

u can do it i beleive in u =]