Random thoughts

I don't know what's going on inside my head. I keep having such random thoughts, like a television changing channels. It gets so overwhelming. I can't concentrate on one thought. I can't read anything without my mind wandering off to who knows where...

I know that I am in some kind of funk. I pretty much closed myself off in the bedroom most of the weekend. Partly due to the pain coming back and partly from feeling worthless and depressed. I hate getting dressed to go anywhere. It seems like such a chore. Most of my clothes don't fit me anymore. I don't want anyone to see me.

One minute I'm excited about something, the next I'm so fucking depressed, I think about not being here... I sit and try to define who I am, and I can't do it. Why am I here? I'm of no help to anyone anymore. I have no talents to share with anyone. I'm just an average person with a disability. That's it.

One minute I'm thinking of maybe finding a career that I could actually do, then the RA pain comes back and I realize how foolish I am to think I could work a full time job. The Remicade is not working. I had about 2 good weeks. Now the pain is coming back. The severe pain again. I am so lost and confused. My head is so full of random thoughts, ideas, gloom, hope, happiness, despair... I try to sleep to escape the pain and the thoughts and anxiety inside my head. I can't control my thoughts anymore and it's driving me crazy.

I visualize scenarios of my life in my head. Then things don't go at all like I'd hoped and I'm disappointed. I rehash things from my past and it causes anxiety and panic attacks. I need to pull myself together...

Me

Today I was awakened by my furry companions. Each day they wake me wanting to run in the yard, then to come in for their breakfast and treats. After this I shuffled off to the bathroom to complete my morning routine. I looked in the mirror. I truly looked at myself and did not recognize the image looking back at me. When did I start looking like this?

I see the fine lines around my eyes. The deeper lines around the mouth. I smile and more lines... My skin appears dull, lifeless, I notice age spots. The gray hair, there seems to be more and more of them. Time, stress, and a hard life has caught up with me. Inside I do not feel much older than I did at 20. Why is age so cruel to women? Men are attractive as they age. Women are criticized, and go through so much to remain ageless.

Physically my body does feel old. RA does that to you. I can't do the things I used to enjoy. I can no longer ride a bike, play basketball, garden, or be spontaneous. On a whim I would totally rearrange all the furniture in a room. Moving couches, chairs, entire entertainment centers, all on my own, because I wanted a new look to the room. I used to enjoy walking my dogs around the neighborhood. I remember hiking, and camping doing fun things outdoors. How life has changed.

Things have changed emotionally and intellectually for me also. I feel wiser than I did when I was 20. When a person is young you tend to feel invincible. You take more risks, not worry as much. Now I worry about my future, paying bills, finding my place in the world. I still enjoy having fun, silly fun. Juvenile humor still makes me laugh as well as witty intelligent humor. When I was young I wanted to just have fun. Go out with friends. Now I tend to be a homebody. I have a yearning for knowledge now also.

The change in the mirror reflects the changes in my life.

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...

Infusion day

I had my visit to the rheumatologist. My results were back from my ultrasound. Every thing looked fine there. So that's good news. The results from my urinalysis showed blood in my urine again, so I did another test to see if that has cleared up. If it shows blood again she wants me to see a urologist about it. It seemed like it took longer than usual for the infusion. I got there at 10:30 and didn't get out of there until 2:45. I can usually fall asleep while I'm there. Mostly because there are nice comfy recliners for us. No sleep today. Maybe that's why it seemed to take so long! I really need to get a recliner at home. It sure would help me get some sleep on nights when my shoulders or hips are hurting...

Overall, I felt pretty good today. Some pain in my shoulders and hands. So I decided to go grocery shopping after the doctor's visit. The price of everything is going up. It's really getting ridiculous.

Well I forgot to make copies of all of the paperwork for Disability. I need to copy all the information so that I'll have a copy for myself. I really hope it doesn't take as long as some people say to hear something back from Disability. I've heard stories that it takes a year or two...

Monotony

One day intertwines with the next. I have become a hermit and rarely leave the confines of my home, sometimes not leaving my bedroom. I try to get out every once in a while or I might go crazy.

I have been filling out endless paperwork for SSI and Disability. Damn! They want to know everything about me. Asking what makes me upset, what I do when I am criticized... They also want to know financial and personal information about anyone I live with. Well, I don't know all of the financial information and such about G. So they are out of luck. Maybe I'll be out of luck too...

I just need some money for personal items and pay a bill or two. Also for food. Looks like I'm going into rice and beans and Ramen noodles mode. I thought those days were over years ago. I forgot rice is in short supply of late.

Tomorrow I need to make some copies and mail off all of this paperwork. I need to hear something soon. Shit, where's the local food bank around here?

I'm supposed to get a Remicade treatment on Wednesday, that is if my insurance hasn't been cancelled. I'm worried about getting another treatment. What if the Remicade is just making me worse? I sure had a bad episode after the last treatment. I am so confused about everything anymore. I'm just going to crawl under the covers and hide. Maybe no one will notice I'm gone.

Dreary Saturday

Well, I awoke to the sound of crashing thunder early this morning. I absolutely love thunderstorms. The power of nature is amazing. I listened to the storm until the sound of the thunder gradually faded. I then dozed off until around 8:00am.

My stomach was rumbling and gurgling. This has been going on since about Tuesday of this week. I've been having annoying issues with my stomach or digestive system. Serious bloating, fullness, cramping, you name it. If nothing shows on my ultrasound, I'm going to make an appointment with a gastroenterologist. It sucks when you are hungry and can only eat a couple of bites and feel full. If I eat more, it comes back up... At least maybe I'll lose some weight...

It's supposed to be a rainy weekend. I'm not sure if I'll be doing anything exciting. I do want to go see Krystal's bundle of joy on Sunday. Maybe do a cookout with the family.

My RA pain is not so bad right now. I guess maybe the Solumedrol infusion I got this week has helped. I felt pretty good the other day, so I decided to clean up and rake the front yard. Bad idea! The next day I felt horrid. Pain in my shoulders, hands, and hips. I so want to do things, but my body makes me pay for it later. So what am I supposed to do? Sit around and watch life going on around me? I'm still going to do some physical things on occasion. If I have to pay for it the next day, so be it. Today I have some pain in my wrists and elbows. It's not as severe as last week, which is a blessing.

I want to have a garage sale next weekend. I'm strapped for cash and need to pay for my insurance and a few other things. I'm dreading it... A garage sale can be a royal pain in the ass! But we have so much stuff in our garage, not to mention the junk (er, I mean treasure) in our closets. This house is packed with way too much stuff. Time to clean it out! I almost forgot that I have quite a few things at my dad's house too...

That's all for now.

In Limbo

I saw my rheumatologist today. Told her everything that has been going on lately. I told her I haven't had a good day since my last infusion. I asked her about a possiblity that I might have another autoimmune disorder, but she didn't think so. She said she had one other patient that had similar syptoms after getting Remicade and it turned out she had a reaction to Remicade. So she ordered some kind of "antinuclear"(?) blood test. She said I could have had an infection when I got my last treatment and it could have exasterbated from there. So today, I got a Solumedrol infusion, blood work, another urine test, and some specialty blood work that has to be sent out for testing. My ultrasound results weren't in, so I'll find out about that next week. My next Remicade infusion has been moved up to next week on Wednesday the 30th. At this point, I don't know if I want another one! Basically I left the doctor's office more confused than ever and getting no definitive answers. On top of that they missed my vein trying to get the IV going. She went at it again and it hurt like hell, almost like it hit a nerve. EEEEOOOOWWW! I've never had one hurt like that before. That's going to leave a mark! Soooooo..... I don't know a damn thing about what is going on with me. At least yesterday things went well at the Social Security office. Got in and out of there smoothly. I had all the information needed and the lady was nice and helpful. I have enough work credits to apply for disability. I also qualify for SSI. I just have to wait to see if I'm approved. Sherry had to drive me because my right wrist, my knee and my neck was hurting. It was a good thing I was having a bad day since I was applying for disability... I didn't make it to the Crawfish festival. We're going to try again this weekend. (the last weekend for it) I did make it over to visit my Dad on Sunday. I had a nice visit. It was good to see the family. My niece and nephew are getting so big. Megan looks just like her mom but lighter hair and John looks just like my brother when he was little. They're both so cute. Krystal is ready to have the baby. Actually she should have it today! Aliyah is getting big too. Such a pretty little girl. Well, I need to check and see how Krystal is doing. That's about it for now. Except, I miss my friends and miss working!

Rheumatoids????

"Red alert! Red alert! All joints to your battle stations! We have been infiltrated by the inflamed Rheumatoids! This is a full scale attack!"

Resistance is futile...

What the frack?

Yes, this seems to be a full-blown flare... I swear this came on strong last night. The swelling went down in my hand and I could move it pretty well, then bam! My shoulders started getting that piercing pain. This is both shoulders this time. My hips are getting that stabbing feeling if I move them just a little, shooting pains into my groin. (yes that is "groin" he-he!) My left elbow is throbbing too. Walking is barely possible. And again I have to keep my arms pinned to my sides and can only move them from the elbows down. As Angel well knows, I look like I have flippers instead of arms!

If this weren’t so fracking funny, I’d lose it!

These $4,000 Remicade treatments are working wonders! Woo hoo! (that’s sarcasm)

So I will be in bed most of the day. With an occasional trip to the loo. You know where to find me! I might bug the hell out of all of you with annoying bulletins...

Beam me up Scotty!

P.S. Maybe it should be Rheumatoidians. Rheumatoids sounds a lot like hemorrhoids!