Sick and Tired of being Sick and Tired

Today was one of those days where I was trying so hard to fight off a pitty party but my emotions were uncontrollable at times throughout the day. I can't work which makes me feel worthless. I want to contribute, I want to be able to feel like I am accomplishing something each day. I can't even go to school because the symptoms got so bad over the last 2 terms that I couldn't finish the terms so I lost financial aid. I can't crochet or create the scrapbooks I want to make for the kids because I am shaking so bad lately. I feel like the only thing I can do is sit here and hope that at the next appointment the doctors will open their eyes see that I am truly in pain, suffering with this fatigue, and its not all in my head.
I try so hard not bitch, complain, groan, moan, cry, or feel sorry for myself. But putting on this brave face all the time just gets to be too much sometimes. I listen to doctors tell me well if you lose 50 or 60 pounds your headache will go away, then another doctor tell me this headache is a direct complication of the disease I have. Yet, another doctor will tell me she knows I have the disease but the medical records she has do not give solid proof that I have Antiphospholipid Syndrome. I hardly have any quality of life right now. Yet, because I have not had a DVT, stroke, heart attack, low-platelet count I am considered lucky because I only need what they call minimal treatment.
Well then I want to know why can't I concentrate, why don't have energy, why can't I move without pain in my joints and bones? Why can't I hold my children, play outside with them, why can't I hold a job? My symptoms may not be as severe as others and yes I am thankful that I have not had to deal with clots or anything life threatening, but man this is crazy.
My life revolves around how I feel for the day. Its not like I can wake up, get dressed, and take care of all the daily activities that need ot be taken care of. Its not like I can say ok kids today we are going to make breakfast together, then we will do a craft, and then we will go swimming or go to the park, and hows about BBQ tonight and a picnic on the living room floor. I am lucky if I can do one of those with the kids.
I always wanted so much more for my life. I watched my mom go through all this by herself and I am sure if someone knew what was really wrong and didn't just pass her off to meds she would have lived a much happier life and did so many of the things I know she wanted to accomplish in her life.
I don't want to lock myself away in a room because I am so tired of  people saying  you need to make changes in your life. You need to do this, you need to that, you need to change this about yourself and life will be much better. I am so sick of hearing its mind or matter or you just need a hobby.
 I am so sick of doctors talking to me like I am dumbass who hasn't done my research, who doesn't live in this body on a daily basis, or some hypochondriac seeking attention or drugs.
I want to finish my degree, I want to do something in this life to make my family and friends proud of me. I want to fulfill the purpose God put me on this earth to fulfill. I want to make a difference, I want to travel, I want to see places, things, and meet people. I want to my life to mean something. I don't want to waste away or just merely BE.
But how do I do that when I can't seem to get the help that I need. Part of me wants to give up on going to NYC to see this doctor. Part wants to delete the group page and stop trying raise awareness. There are so many disease, causes, and situations that really need attention why would I expect people to raise awareness if the doctors won't even listen when the patients talk.
Life right now just seems to be at a stand still. I feel bad praying, asking for a healing, asking for all this to stop, or to provide a way to find a cure, raise awarness. I think who I am to ask. I hate asking people to help me financially, emotionally, and physically. I never asked for help. I always made a way to get things done. I was a survivor. I didn't take crap from anyone. I wanted something I went and got it. I busted my butt for everything and never once asked for a hand out. I hate asking now. I want to work, pay my own bills, save my own money, go out and enjoy family time either on things that don't cost or if we feel like it go do something that does cost money.
I want to be able to go into a store and not look like a hoodrat. I want to get dressed everyone morning and if for some reason I don't feel like getting dressed then I don't have to. I want to exercise everyday, each healthy, and stop smoking. I can't exercise because I can't freakin move. I can't eat healthy when finances are so tight and I am making sure the kids are eating before I eat. I smoke more in situations like this because I am so stressed and nervous. I listen to the doctors say lose weight, lose weight, ok you tell me how I am suppose to lose weight when I am on high doses of steriods 3 to 4 times a year. Not to mention when I am chemo and takng the steriods I don't eat because my stomach is so upset. I want to just let all this out to the doctors but I can just hear what they would think or even have the nerve to say outloud...."I think you need to look into getting on or changing antidepressants." Which makes me even more pissed off. So there it is, my frustration! I will sit here and suffer in silence and we can wait until unmistakable complications arise and then see what they do if they are able to catch it quick enough to save me.