Trying

Well it’s been a while since I’ve been on Remicade. I’ve been doing a lot of thinking lately about my life and trying to make positive decisions.

After a couple of bad patches with Remicade, I have actually been feeling pretty good the last couple of weeks. So (knock on wood), I think maybe the Remicade is starting to work. I still have some pain in my hands and if I overdo it, I feel bad later. But, thank goodness, the intense pain that brought me to tears has not been giving me trouble. Yayyyy!

So I have decided to go back to school. It’s just a certificate program at the local community college. Hoping to get a secretarial/administrative assistant kind of job. One that will be easier and less stressful on my body.

I’ve also decided to go back part-time to my waitressing job while I am in school. This is mostly so that I can keep my health insurance, and have some extra money. I just got a bill for my last Remicade treatment and I only owe $43.00 this time. Whew! A lot better that the $400.00 bill from the time before. I guess I’ve reached my out-of-pocket limit and the cost will not be much for the rest of the year. So I am going to go ahead with Remicade treatments. I took myself off the methotrexate, and I feel better without it. I’m still hoping I can get Medicaid. I did some research online and from what I’ve read, Remicade is one drug that is covered under Medicaid and Medicare.

Things are slowly looking up. I am hoping that by this time next year I’ll have a better job and be able to take care of myself. Trying to stay positive here!!

Could it be?

Well here goes...

After my bad episode last month with my RA I've been questioning my diagnosis. Last month, a few days after my Remicade treatment I had a really bad episode. I was feeling bad that night and the next morning I had a fever, aches and pains all over my body, a swollen and painful knee, pains in my neck, abdominal pain, and a rash on my face, neck and chest. I was able to get an appointment at my rheumatologist's office that morning. My WBC count was double the acceptable range, I had a fever, and was just plain miserable. The doctor thought I had some kind of infection. I ended up getting a steroid shot, a pain shot and prescriptions for antibiotics and darvocet. I also got an ultrasound to rule out any gallbladder problems.

My fever went down the next day. I still had bad joint pain several days later and another fever spike. I went back to my rheumatologist one week later. When I saw her I was still not well. My other knee was swollen and hurting, my wrist was swollen, red and painful too. I also had a red rash on my arms and chest. No fever though. I stayed and got an infusion of Solumedrol. My doctor seemed baffled about all of this. She said she looked over all of my test results to see what could have caused this. I asked if I could have Fibromyalgia or Lupus... She basically told me no and blew that off. Anyway I started feeling better a couple of days later.

That was about 2 1/2 weeks ago. Since then I have had one more Remicade treatment. Yesterday I started to have joint pain in my hands and in my neck again. Some shoulder pain also. I have been looking online for some kind of answer. Tonight I came across a site about diseases that mimic Rheumatoid Arthritis. There were several other possibilities including other autoimmune diseases, lyme disease, etc. Then I read about Adult Onset Still's Disease. It listed all of the symptoms I had gone through. The fever, chills, flu-like aches, high WBC count, abdominal pain, and the rash. I actually couldn't believe it. Then I found a site with testimonies of people that have been diagnosed with Still's disease. Many of them were like reading my own story. Still's disease is usually diagnosed in children, but there is adult onset Still's disease. The only thing is that it is rare... It is very much like Rheumatoid Arthritis but with some differences. It would explain why I felt better after getting the Solumedrol.

I'm probably sounding like a nutcase! Aggghhhhh! I guess I just want to know what the hell has been going on with me. I hate to seem like hypochondriac, but I know when my body doesn't feel right.

Enough for now. I need some shut-eye. I hope I can sleep...

What path do I take now?

I don't know where to go from here. I recently got a bill in the mail from my doctor's office. It was for almost $400. Apparently there are charges not covered by insurance for my Remicade treatments. So last month with the extra doctors visits, prescriptions and the Remicade, my bills totaled over $700. That is not including the gas to and from the many doctor visits. That can cost about $8 roundtrip. So add another $40. I can't afford all of this. So it looks like no more Remicade for me...

Hell, even with insurance I can't afford treatment. And people wonder why Americans are fed up with our health care system. It is broken, plain and simple. Republicans don't give a crap about people that can't afford insurance. The Democrats want more "insurance" instead of better health care. It's very frustrating. If I were to get disability and Medicare I would be better off than if I were working and paying for insurance, and paying for all the expenses not covered.

Anyway as far as how I've been doing... I was feeling pretty good for the last week. Today wasn't that great. I'm starting to get a lot of pain in my hands and in my neck. My back is messed up too. I don't think that is RA related. That's something that comes and goes depending on if I lift things wrong or put too much strain on my back.

So for now the future is a mystery for me.

Inspired by another's blog...

A friend of mine recently wrote an interesting blog, opening up and sharing herself. She challenged others to do so also, so here goes.

Some of my general likes: I like cheese. I enjoy coffee every morning. I like sci-fi, and fantasy movies and tv shows. I enjoy being by myself. I like the first cold front in the Fall. I like the first fresh Spring day. I like trying new foods. Physically I like people that are interesting to look at rather than typical beauty. I like a big nose on a man or a woman that is not a typical model-like beauty. I hate that Pamela Anderson/Hollywood definition of beauty. It's very fake. I enjoy sunrises and sunsets. I like traveling to colder climates over tropical climates. I love animals. I love people watching. I like the sound of the ocean, but am afraid of the ocean. I love people that aren't afraid to be an individual. (freaks and geeks!) I love the sound of crickets and frogs. I love getting dressed up and going out for a nice dinner. I love singing in the car. I love the excitement I feel when I am on a plane and going somewhere new. I love the smell and sounds of faire. I like to read but am overwhelmed when I go to a bookstore. I love listening to live music. I like flowers. I like chicken but don't care much for beef. I wish I could go on the show "The Amazing Race".

My general dislikes: I don't like ketchup. I don't like rude people. I hate fake people. I hate that I cry too easily. I don't like wearing shoes in the house. I don't care much for hot summers. I hate it if I get an eggshell in my eggs or a bone in my fish, yuck! I don't like grocery shopping. I hate bugs. I hate a messy house. I really don't like processed junk food like twinkies or hostess cupcakes, it tastes like chemicals to me. I hate people that kiss the boss's ass. I hate lazy people at work. I don't know why but I can't stand Jennifer Lopez. I hate asshole drivers. I hate road construction. I hate it when people are always late. I don't like raw onions, but I like cooked onions. I don't like the fact that this once great country has become a joke to the rest of the world.

I am shy, but can be quite outgoing at times. I care about what people think. But on the other hand I don't care if I embarrass myself around strangers. I am a bit of a neat freak. I like things to be in their place. Clutter drives me crazy. (right now my house is driving me nuts) I am not a phone person, as many of you well know. I have to sleep with a fan on or a sound machine. I am a morning person. There is just something about being up early in the morning when people are still slumbering but the world is awakening... It's as if I am experiencing something others are missing. I like taking naps, but feel guilty when I do. I feel like I should live alone because other people's habits get on my nerves and I like my house to be clean and in order. I love thunderstoms and would one day like to go tornado chasing. I drink too much sometimes. I drink to calm my nerves in social situations. I drink sometimes because it helps to alleviate pain. I love food and I eat too much. I don't care much about designer clothes, but I like designer handbags. I never wear high heels. I like buying things for people and do so to show my love or affection, especially if I feel awkward showing physical affection. I try my best to spell words correctly, but don't always catch my mistakes. I don't like confrontation, but I want communication. I don't understand why men don't talk about their feelings or emotions in general. Seems like men just want to prove their intelligence by retaining irrelevant facts that do nothing to help them in relating to other human beings. I don't understand people that are homophobic. I am nothing like I was when I was in high school. I have turned my back on organized religion. I am computer challenged. I hate it when I can't understand something. I hate it when I feel like someone is talking down to me. I worry too much. I don't understand it when people say they are proud to be "white" or proud to be "black", etc. What are you proud of? You were born that way. Pride should come from something you accomplished, or worked hard to achieve or overcome. It sounds so silly to me. I often feel like I don't fit in. I suffer from anxiety and depression. I can be a total goofball! I can be a girly-girl. I can also get dirty and do hard work. I am not good in relationships. I push people away when I feel I have nothing to give or when I feel worthless. I have many regrets. I honestly don't understand people that have no regrets. How can you honestly be happy with every single decision you made in your life? Come on. We make mistakes and I wish I could go back and change the ones where I hurt other people. Sure we learn from our choices and mistakes, but some of them I would take back in a heartbeat.

I can't stand it when people wear sunglasses indoors. What the fuck, you think you're a rockstar or something? I get sick of people that brag about themselves incessantly. Quit tooting your own horn already! I don't like playing games or lying in relationships. If a guy cheats on me, I'm not so juvenile that I go cheat on them. I hate people that have no manners in public. It's like the human race is going in the opposite direction. We have become more crude, rude, lacking in social etiquette, and selfish. I believe in tipping waiters, waitresses, bartenders, and other service workers very well. I hate taking my truck to get fixed, I always feel like I am being ripped off! I don't mind washing clothes, I just hate folding and putting them away. I used to love to cook, but now it hurts too much to stand in the kitchen. I get along with animals better than with people. I believe in life on other planets. I think true romance or love is elusive and experienced by few. I think people become complacent in life and become stagnant. I believe we don't fight or stand for anything anymore and just go about our everyday lives.

I hate myself and love myself too. I hate my bad habits. I watch too many idiotic television shows, I will procrastinate. I have social phobias and fears. I hate my lack of confidence. I hate when I am lazy. I hate that there are times I want to show affection to someone and I hold back because of some irrational fear. I love the fact that I want to continue to change. I love the fact that I try to keep my mind open to new ideas and new ways of thinking. I love that I care about people in need. I love for my house to feel like a home and keeping it clean. I love art, music, books, and photography. I wish I could be an interior designer or a photographer.

Physically I hate being so tall. I hate my smile so I try to hide it in pictures. I hate other parts of my body. I hate that I cannot control my weight better. I was ridiculed throughout my life for being tall, fat, the space in my teeth, etc. I feel my only good physical features are my eyes and hair. I am intimidated by pretty women. I get intimidated by extremely intelligent people. But I believe I have a quick wit and I'm funny, with a sarcastic twist.

I am upset that our family has grown so far apart. I miss my daughter, but I feel sometimes that I am a disappointment to her. I've missed out on so much... I miss my mom every day. I hate the fact that I was a selfish rude teenager and pushed her away. Just when I was really starting to appreciate her as my mother and getting to know and truly love her, she left me.

I know I talk too much about having RA. I know some people are sick of hearing about it. But what am I supposed to do? It has taken away the good parts of me. I used to be a hard worker. I used to be able to work 40 plus hours a week. I would cook dinner, and clean house. I would mow the lawn, and take care of the yard. I would spontaneously redecorate a room. I would walk my dogs. I used to love taking road trips or just go to Galveston for the day. I used to go to every festival or faire that I could. I used to go out at night and have fun. I used to love throwing parties and going to other peoples' parties. I used to love going for bike rides. I would challenge myself to do things or fix things. I would help friends when they needed it. I can hardly do any of these things anymore. RA has stolen a huge part of my life.

I wish I could have a home in the country and one in the city. I hate the suburbs. The people are close-minded, brain washed by religion, and have no desire to change. That's a generality. I want a house in the country because I love nature, I love animals, I'd like to have a fabulous garden, and have some horses. I would like a home in the city to experience culture, music, nightlife, and fine food.

I'm am confused about religion, the after-life, god, etc. Part of this is because religion has caused violence, war, and hatred. It closes people's minds to knowledge, advancement and growth as human beings. I believe there is a god. I don't believe it is the god that mankind has created to control our thoughts and freedom of thinking. I was taught in church not to question, have faith and be a devoted follower. Conform.

I wish for a better world, but have little faith in humanity. I wish I could do my part in some small way. I don't understand why there have been no cures for diseases in recent times. I believe there are cures for diseases, but there is no money in cures... I sometimes believe in conspiracy theories. I believe there has been contact with other life forms. (crazy I know!) I believe our government has many secrets. I am scared for this country's future.

I wish I could travel the world. I love experiencing new cultures. I am in awe as to the many wonders of this world. I wish I could achieve true happiness or joy. I wish I could give happiness to people that truly deserve it.

I miss the naivete' of my childhood. I also miss the security I felt as a child. I miss making homemade Christmas decorations with my mom and Christmas mornings opening presents with family. I miss home cooked meals at the dinner table and sharing our day with each other. I miss my grandparents basement. My brother and sister and I had so much fun playing and dancing around in that basement. I miss hearing the adults talking in the kitchen as we played in the living room. I miss the sound of my grandparents refrigerator running as it lulled us to sleep in our sleeping bags in the other room. I miss making forts or tents out of blankets in our bedrooms. My mom would let us take all of the canned goods from the pantry so we could play "store" outside on the porch. We grew up poor and never realized it until we were grown. I am afraid of my future. I hate not knowing if I will have a roof over my head in the future. I could end up homeless or living in some shithole on disability. I am not scared of dying. I am scared of living and not being able to take care of myself or being a burden to society and my family.

I feel I am a good person, but wish I could be better.

My hips don't lie

Early this morning I woke up with horrible pain in my hip. I slowly tried to get out of bed. When I put pressure on my leg it sent shooting pains in to my hip. It is even worse if I happen to twist or bend.

Will this ever end? I had such hopes with Remicade. I have tried so many other treatments. I think the only RA medicine my body hasn't been injected with is Orencia. I did feel halfway like a human being for a week after the steroid infusion. My reprieve is over.

Every day is a mystery as to which joints will be painful. What will I not be able to do each day? Will it be painful to try to walk? Will I be able to brush my hair or brush my teeth? Will I be able to get up if I sit down? Will I be able to hold my cup of coffee in my hands? Will I be able to turn the doorknob to leave my bedroom? Will I be able to shower today? Will I see a bright side to this existence? Will I ever be truly happy again?

Today has not started off well...