The two worst joints on my body are my left knee and my right shoulder. Today I'd like to focus on my shoulder, since it's driving me absolutely crazy right now.
If you're a normal reader, you know already that I love baseball - the smell of the grass and leather, the pinstripe pants, playing catch with Theron - even if I don't quite understand every single thing about the game quite yet. When I started playing catch with Theron, I noticed that my shoulder wasn't hurting as much. I got better at catch and wasn't in as much pain - for me it's a win-win situation.
Sadly, with there being a wind chill advisory from the National Weather Service, I'm not in a rush to go out and play catch. With that said, who says you can't play catch in the house? Yeah, my mom said that too. As long as you're not actually throwing something, you should be fine though right? Normally, if I work my shoulder like a pitcher, it feels a lot better. Sometimes I don't even have to take medicine, which is always nice.
Sometimes, though, the pitching exercise approach doesn't always work... and given the fact that I can't just stop moving my shoulder between work, school, and my everyday activities, there's not a whole lot more I can do... Or is there?
Ice and wraps usually do the job when exercises won't work. It's harder to take care of a shoulder problem, however, since there's no easy way to wrap it and keeping ice on it is really difficult. On top of that, there's really no comfortable position to keep my shoulder in so that it doesn't hurt. The other bad thing about the arthritis affecting my shoulder so terribly is that the effects usually do spread down into my arm or up into my back and neck. For instance, my forearm is aching something fierce (I feel like I'm 87, so why not talk like I am?). Occasionally - and this is probably not a good sign - my elbow or forearm will go numb from the pain.
It makes it hard to conduct my everyday activities, especially during school. I am right-handed, so that really doesn't help my situation. I have a feeling though that if I was left-handed, my left shoulder would be in pain. I'm lucky enough to have friends at work who will help push my arm until it pops the right way again. This method doesn't work so well, but it helps to relieve the pain for a short while at least.
With time and rest, this feeling generally will go away. It just always takes way more time than I'd like.
NOTE: Since my monster post, I grew less lazy and bought some multi-vitamins. I've only been taking them for about three days, so I can't say that I've had a remarkable change quite yet. I really hope that it helps get my body the nutrition that it desperately needs.
ANOTHER NOTE: You may have noticed that more of my posts lately are related to my disease. I hope that by blogging about my JRA pains I might be able to help other people. Plus, I've been told it's pretty interesting to read about. I will still blog about the news and politics here and there, so don't fret!
Showing posts with label arthritis. Show all posts
Showing posts with label arthritis. Show all posts
Tuesday, January 13, 2009
Friday, January 9, 2009
The {Not-So} Skinny on JRA
What is This Noise All About Anyway?: JRA, Still's Disease, and Other Fun Stuff
The type of Juvenile Rheumatoid Arthritis that I have is called Systemic Onset JRA, or Still's Disease after Brit George Still. Systemic means that the arthritis not only affects my joints but the rest of my body as well. There isn't a known cause of the disease, but there are a few ideas. The "Onset" part of the disease means that an event occurs that triggers a hidden autoimmune disease. This is the most commonly accepted explanation. For example, I had Strep Throat shortly before the symptoms of the disease starting appearing when I was about four. Nowadays, they've come up with yet another term for JRA - Juvenile Idiopathic Arthritis (JIA). This is meant to differentiate JRA from Rheumatoid Arthritis.
There are three major types of JRA:
How D'ya Feel?: Symptoms of Still's
I know that there must be diseases out there where the pain is worse, even more constant. It saddens me to think about that. Now, I can't truthfully explain the pains that I go through everyday, because this pain is really all I know. I don't know what it is like to be a 'normal' person, someone who can be overly active and not suffer greatly for it.
The first major symptom that I had was fatigue. I was exhausted, lacked energy - for a four year old, that's generally a pretty bad sign. I then developed a salmon-colored rash all over my body that really only occurred during the nighttime and disappearing by the time any doctor's appointment could be made. Sometimes it itches, sometimes it doesn't. Scratching it can lead to odd bumps all over the skin. Another big symptom is high fever. I once had a fever of 106 degrees, which sent me into convulsions and shakes. I also had the iritis that was mentioned in the tidbit on Oglioarticular Arthritis. They thought that I had pink eye for a while.
Other than that, there is excessive bone popping. We all know that terrible feeling when your ankle or elbow pop at the wrong time. On a normal basis, I no longer feel it because the amount of pain I'm normally in is far greater. Another problem that plagues many suffering from JRA are TMJDs, or Temporomandibular Joint and Muscle Disorders. Confused? Basically, I have terrible jaw pains. I can actually pop my jaw out of place, which can be a cool party trick or a painful accident.
Other than the rashes, there are several other skin conditions that are prevalent to those with JRA. Dry skin is a big problem, which I have found only Burt's Bees to cure. Occasionally, I will get what we call "alligator skin" - small bumps, similar to goose bumps, which bring about terrible dry skin. This condition can last for up to a month and longer. Nodules can also appear. These can resemble small pimples or giant lumps under the skin. I generally get them on my knees in pimply form. You really aren't supposed to get rid of it through your own means. However, the pressure from them can be terrible. Sometimes they can be picked like a pimple, others they must be popped with a needle. The best solution, if possible, is just to cover the nodule with a band-aid and wait.
The biggest thing that makes Still's Disease different from any other form of JRA is how it affects other parts of the body. My organs are affected on a daily basis. I have problems with my digestive system, which results in those annoying gurgly noises mid-class that end up distracting others. More than that, foods that I may be fine eating one day can turn my day into a nightmare the next. In the past, my stomach has suffered terrible aches for up to eight months at a time. Also, because the disease attacks my liver, I have to be careful of the medicines that I take.
And let's not forget that teeth are also bones.
Who Needs a Break?: Video Time!
While it's not much, a video is always a good distraction - even if it's related to what you're reading.
This little girl can hopefully look forward to a better life with the advancements in technology.
Poked and Prodded: My Life Story
Blood tests for Rheumatoid factor and lupus, which both show the adult stage of Rheumatoid Arthritis, usually fail to show any signs of JRA. Back in the day, doctors really didn't know about JRA. When I was first sick, they thought I just had allergies. I had a whole booklet of foods that I wasn't supposed to eat so that we could find out exactly what I had a problem with. I was a four and a half year old banned from eating PB&J! Imagine the sheer torture! But I digress, as usual...
For months on end, they drew blood every week hoping to find what was wrong. I was anemic with a high white blood cell count. I had high levels of phosphorus, alkalines, and LDH. On occasion, I had: high AST (SGOT); low CO2 (poor lung capacity); low glucose; low urea nitrogen; high globulin; high MCH; low MVP; very high sedimentation rate; and, as I have already mentioned, a low red blood cell count.
And I was losing proteins quickly. In fact, any time I sweat or use the bathroom I lose proteins. I always eat as much meat as I can in order to get proteins back in my system. Now, I know pizza isn't the best thing for me, but I love most meat lovers zza's. I usually try to have some sort of nuts around, like cashews. Veggies are good to have around too. I love Caesar salads and wraps. And, thanks to Chartwells' amazing new options, there's an organic place to eat on campus where I can get tasty soy and tofu products too.
We got hit by a mack truck when we got a misdiagnosis. When I was six years old, we were told that I had just six precious weeks to live, that I was dying from Leukemia. The doctors told us that, if I was started on chemotherapy right away, I could prolong my life and maybe even beat this cancer. Luckily, my mother had great medical knowledge and knew that the symptoms didn't really fit. Through tireless days and weeks and months of research, we were able to come up with Still's Disease. After the searching, there was a name to the monster that was banning me from school, friends, birthday parties, and normal child activities. Finally, we could start finding ways to treat and cope with this disease.
Trick or Treat-ment: Limiting Foods, Gross Medicine, and Ace Bandages
With all these problems, it can be pretty overwhelming to try and live a semi-normal life.
Unlike most people confronted with this disease, I control it with Aleve, diet, and meditative pain management. Why? Because I have no insurance. I also do not like some of the (possible) side effects of the medicines out there - anal leakage? C'mon, really? I'd rather limp and have my dignity.
In all seriousness, this is really a disease that needs medical attention. I don't personally think that all medicine, all the time is the way to go, but for some people that works. I took liquid Naprosyn as a child and it reeked havoc on my digestive system. As I mentioned before, I do take Aleve - which is Naproxen Sodium and not that much better - occasionally. Any over-the-counter pain reliever is good for me really. Since I really don't have any experience with other forms of medication, I went a-searching the interweb to bring you information on this front:
The type of Juvenile Rheumatoid Arthritis that I have is called Systemic Onset JRA, or Still's Disease after Brit George Still. Systemic means that the arthritis not only affects my joints but the rest of my body as well. There isn't a known cause of the disease, but there are a few ideas. The "Onset" part of the disease means that an event occurs that triggers a hidden autoimmune disease. This is the most commonly accepted explanation. For example, I had Strep Throat shortly before the symptoms of the disease starting appearing when I was about four. Nowadays, they've come up with yet another term for JRA - Juvenile Idiopathic Arthritis (JIA). This is meant to differentiate JRA from Rheumatoid Arthritis.
There are three major types of JRA:
- Oligoarticular JRA, which affects four or fewer joints. Symptoms include pain, stiffness, or swelling in the joints. The knee and wrist joints are the most commonly affected. An inflammation of the iris (the colored area of the eye) may occur with or without active joint symptoms. This inflammation, called iridocyclitis, iritis, or uveitis, can be detected early by an ophthalmologist.
- Polyarticular arthritis, which affects more girls than boys. Symptoms include swelling or pain in five or more joints. The small joints of the hands are affected as well as the weight-bearing joints such as the knees, hips, ankles, feet, and neck. In addition, a low-grade fever may appear, as well as bumps or nodules on the body on areas subjected to pressure from sitting or leaning.
- Systemic JRA, which affects the whole body. Symptoms include high fevers that often increase in the evenings and then may suddenly drop to normal. During the onset of fever, the child may feel very ill, appear pale, or develop a rash. The rash may suddenly disappear and then quickly appear again. The spleen and lymph nodes may also become enlarged. Eventually many of the body's joints are affected by swelling, pain, and stiffness.
How D'ya Feel?: Symptoms of Still's
I know that there must be diseases out there where the pain is worse, even more constant. It saddens me to think about that. Now, I can't truthfully explain the pains that I go through everyday, because this pain is really all I know. I don't know what it is like to be a 'normal' person, someone who can be overly active and not suffer greatly for it.
The first major symptom that I had was fatigue. I was exhausted, lacked energy - for a four year old, that's generally a pretty bad sign. I then developed a salmon-colored rash all over my body that really only occurred during the nighttime and disappearing by the time any doctor's appointment could be made. Sometimes it itches, sometimes it doesn't. Scratching it can lead to odd bumps all over the skin. Another big symptom is high fever. I once had a fever of 106 degrees, which sent me into convulsions and shakes. I also had the iritis that was mentioned in the tidbit on Oglioarticular Arthritis. They thought that I had pink eye for a while.
Other than that, there is excessive bone popping. We all know that terrible feeling when your ankle or elbow pop at the wrong time. On a normal basis, I no longer feel it because the amount of pain I'm normally in is far greater. Another problem that plagues many suffering from JRA are TMJDs, or Temporomandibular Joint and Muscle Disorders. Confused? Basically, I have terrible jaw pains. I can actually pop my jaw out of place, which can be a cool party trick or a painful accident.
Other than the rashes, there are several other skin conditions that are prevalent to those with JRA. Dry skin is a big problem, which I have found only Burt's Bees to cure. Occasionally, I will get what we call "alligator skin" - small bumps, similar to goose bumps, which bring about terrible dry skin. This condition can last for up to a month and longer. Nodules can also appear. These can resemble small pimples or giant lumps under the skin. I generally get them on my knees in pimply form. You really aren't supposed to get rid of it through your own means. However, the pressure from them can be terrible. Sometimes they can be picked like a pimple, others they must be popped with a needle. The best solution, if possible, is just to cover the nodule with a band-aid and wait.
The biggest thing that makes Still's Disease different from any other form of JRA is how it affects other parts of the body. My organs are affected on a daily basis. I have problems with my digestive system, which results in those annoying gurgly noises mid-class that end up distracting others. More than that, foods that I may be fine eating one day can turn my day into a nightmare the next. In the past, my stomach has suffered terrible aches for up to eight months at a time. Also, because the disease attacks my liver, I have to be careful of the medicines that I take.
And let's not forget that teeth are also bones.
Who Needs a Break?: Video Time!
While it's not much, a video is always a good distraction - even if it's related to what you're reading.
This little girl can hopefully look forward to a better life with the advancements in technology.
Poked and Prodded: My Life Story
Blood tests for Rheumatoid factor and lupus, which both show the adult stage of Rheumatoid Arthritis, usually fail to show any signs of JRA. Back in the day, doctors really didn't know about JRA. When I was first sick, they thought I just had allergies. I had a whole booklet of foods that I wasn't supposed to eat so that we could find out exactly what I had a problem with. I was a four and a half year old banned from eating PB&J! Imagine the sheer torture! But I digress, as usual...
For months on end, they drew blood every week hoping to find what was wrong. I was anemic with a high white blood cell count. I had high levels of phosphorus, alkalines, and LDH. On occasion, I had: high AST (SGOT); low CO2 (poor lung capacity); low glucose; low urea nitrogen; high globulin; high MCH; low MVP; very high sedimentation rate; and, as I have already mentioned, a low red blood cell count.
And I was losing proteins quickly. In fact, any time I sweat or use the bathroom I lose proteins. I always eat as much meat as I can in order to get proteins back in my system. Now, I know pizza isn't the best thing for me, but I love most meat lovers zza's. I usually try to have some sort of nuts around, like cashews. Veggies are good to have around too. I love Caesar salads and wraps. And, thanks to Chartwells' amazing new options, there's an organic place to eat on campus where I can get tasty soy and tofu products too.
We got hit by a mack truck when we got a misdiagnosis. When I was six years old, we were told that I had just six precious weeks to live, that I was dying from Leukemia. The doctors told us that, if I was started on chemotherapy right away, I could prolong my life and maybe even beat this cancer. Luckily, my mother had great medical knowledge and knew that the symptoms didn't really fit. Through tireless days and weeks and months of research, we were able to come up with Still's Disease. After the searching, there was a name to the monster that was banning me from school, friends, birthday parties, and normal child activities. Finally, we could start finding ways to treat and cope with this disease.
Trick or Treat-ment: Limiting Foods, Gross Medicine, and Ace Bandages
With all these problems, it can be pretty overwhelming to try and live a semi-normal life.
Unlike most people confronted with this disease, I control it with Aleve, diet, and meditative pain management. Why? Because I have no insurance. I also do not like some of the (possible) side effects of the medicines out there - anal leakage? C'mon, really? I'd rather limp and have my dignity.
In all seriousness, this is really a disease that needs medical attention. I don't personally think that all medicine, all the time is the way to go, but for some people that works. I took liquid Naprosyn as a child and it reeked havoc on my digestive system. As I mentioned before, I do take Aleve - which is Naproxen Sodium and not that much better - occasionally. Any over-the-counter pain reliever is good for me really. Since I really don't have any experience with other forms of medication, I went a-searching the interweb to bring you information on this front:
First-line medication. Nonsteroidal anti-inflammatory drugs (NSAIDs) are usually the first medications tried to control JRA inflammation and symptoms. Naproxen sodium is the most frequently used NSAID treatment for JRA. Doctors choose naproxen based on its low incidence of side effects compared to its effectiveness.10 Ibuprofen is an effective alternative. But in general, less than one-third of children will have significant relief from NSAIDs.5NSAIDs and corticosteroids are most often used to control the initial stages of systemic JRA and may be used in children who have pauciarticular (oligoarthritis) with shortening of the muscles around the joints (contractures) or polyarticular disease with joint pain and swelling.10, 5
Second-line medication. If symptoms are not well-controlled with NSAIDs or corticosteroids, stronger medications such as methotrexate are often used successfully.10, 5 Methotrexate, sulfasalazine, and other second-line medications are sometimes referred to as disease-modifying antirheumatic drugs (DMARDs). Some experts prefer to call them slow-acting antirheumatic drugs (SAARDs).
Some children with JRA gain significant benefit from early methotrexate treatment. Although there is no definitive way of knowing which children are the best candidates for early methotrexate treatment, this practice is becoming more common in an effort to prevent joint and eye damage. Early treatment with methotrexate is often used for polyarticular JRA.5
Biological therapy is a newer option to treat JRA, particularly polyarticular JRA, that does not respond to other treatments. The biological agent etanercept, which is a tumor necrosis factor (TNF) inhibitor, has had some success in relieving symptoms and decreasing the number of flare-ups. Other TNF inhibitors, such as infliximab, are still under study to treat JRA.11
Medications used to treat JRA
First-line
Second-line
Other second-line medications used less often
- Sulfasalazine
- Antimalarials (such as hydroxychloroquine sulfate [Plaquenil]
- Adult therapies, such as cytotoxic (cell-destroying) drugs and intravenous human immunoglobulin, that may be used for rheumatoid arthritis in adults but are not yet proven to be safe and effective for children with JRA
Gold salts were one of the first treatments used for joint inflammation, and you may still hear about them. However, injected gold salts have been replaced by methotrexate for the treatment of JRA. Gold salts taken by mouth (oral) have not been shown to be effective for JRA.10
In one of my first posts, I detailed how I meditate to relieve pain. That is, when I focus enough in order to do that. On a more normal basis, I actually meditate without really even knowing. I don't even space out anymore; I focus on what I am doing, but am concentrated enough that I don't really feel the minor pains. I won't lie and say that I am pain-free - far from it - but I feel less pain on a consistent basis than other people I know with JRA or RA.
I have a feeling that a lot of it has to do with attitude. There is an older woman who works in the shoe department at work with RA. Her hands are deformed terribly and yet she still works. She still tries her hardest to not let the disease get to her. I almost always have a positive attitude. Even when I'm in pain, I know that things could always be worse. I still have pretty good control of my motor skills and I'm not in a wheelchair (which, by the way, was a prediction for around age eight when I was diagnosed).
Physical therapy is also an important thing. Water activities are better than anything else really, because it's low-impact exercise. The warmer the water, the better. Who needs a better excuse to get a hot tub huh? Range of motion (ROM) exercises are also very important in keeping joints as healthy as can be. Regular exercise should be done when possible. By looking at me now, you'd never guess that I used to run upwards of twenty miles a day, but I did. Surprising huh?
Diet is another important part of controlling the disease. Since I am anemic and hypoglycemic, I have to make sure that I eat enough iron, protein, and sugar. In reality, the hardest part is getting the nutrients that I need daily. I've been debating whether or not I should set aside some money to get multivitamins to take everyday. Seeing as I don't always eat right, it's probably a good idea, but I'm too lazy.
And if all else fails, wrap the most affected joint with an ace bandage. Seriously, it helps a lot.
The Moral of the Story: What Can You Learn About Living With JRA?
The biggest thing to remember is not to feel weird. There are plenty of people out there living with different ailments and there's no need to feel alienated because you're not "normal." After all, what is normal these days?
While there isn't a cure for JRA, remember that there are many tools available to fight the disease. With a positive attitude and a supportive group of family and friends, you can be the best you possible. Research as much as possible. Ask questions of your doctors. Be as active as you can be. And remember that I am always one email or comment away if you have questions or need advice.
Compare yourself to a hurdle runner - you have many hurdles to jump over, but if you stretch first and pay attention to the track ahead of you, you will be able to clear every hurdle in your way.
Monday, June 30, 2008
I Felt Like Posting Again
I was watching CNN just now and saw the story about a teacher being fired for using The Freedom Writers Diary as a teaching tool to help motivate her students. She claims that the book will help them because it helps to convey the message that the students are not alone in the problems that they face. The school board suspended her for a year and a half without pay, so they basically fired her. They didn't approve of the book's foul language, which I can understand, but I have read many books with terribly foul language before. The only book that I could never get into because of the language and content was Catcher in the Rye. But I digress. The book's content is a little questionable but the message at the end of the book I think pushes past the earlier content to give an uplifting message to all. The teacher did send out permission slips to all 150 students' parents, and only one family refused to sign. The school board has looked over the case and will allow the teacher to return in the fall. However, the teacher refuses to return unless she's allowed to teach the book. After all, it is in the school's library.
And for anyone who is/was interested in the Body Worlds exhibit at the Milwaukee Public Museum, there's a story about it here. It really was a fun and interesting experience. I'm even flirting with the notion of donating my body to the exhibit so that more attention can be brought to how JRA or arthritis in general can ravage the body. I think that if more people could really understand it, they wouldn't underestimate it as much as they do currently.
And for anyone who is/was interested in the Body Worlds exhibit at the Milwaukee Public Museum, there's a story about it here. It really was a fun and interesting experience. I'm even flirting with the notion of donating my body to the exhibit so that more attention can be brought to how JRA or arthritis in general can ravage the body. I think that if more people could really understand it, they wouldn't underestimate it as much as they do currently.
Thursday, February 14, 2008
My Life Right Now
My hands are getting ugly because of the arthritis. My pointer fingers have started to turn inward towards my middle fingers, and my pinkys are getting a lot more curved. Both my middle fingers are swollen a lot lately, but the right one is way worse. I gotta stop popping my fingers... Eek.
Theron is totally trying to help me figure out how to take care of my hands and arthritis. I think maybe he's scared too a little... I'm super scared, but I try not to show it, especially for him and Kelsey. She has this too, after all, and I don't want her to be afraid of turning out like me the rest of her life.
School is going great. I'm having a lot of fun. Kim is the nicest teacher I think I've ever had, and I really like having her as a friend too.
While it gets really tiring working two jobs, I'm okay with it. I'm bringing in pretty good money right now. Almost got my credit card payed off and starting to save up for my first car! Kmart isn't being so bad now either - now that Grrr knows that I can do layouts, she respects me a little more I think... which is sooo nice. Not to mention it's nice to have Nando & Lucas back from their various trips. Although I never get to see Megan anymore :'( She's going to Jamaica with her mom later this month, and totally not taking me! *pout* I suppose I could go next year... :)
I'm kinda nervous for my mom. She has to drive to the University of Michigan tomorrow for training for her other job and the car is crap... and so is the weather. I know that she'll be okay, but she still worries me... not to mention that's a whole week without mom... so I kinda have to be mom... which isn't easy if you're not super-human.
I got to talk to my real dad for the first time this weekend. It was a little awkward, but it went well I think. Theron had just gone to bed and I thought maybe I'd just write Chris an email. I'd been meaning to contact him for quite some time, but was entirely too nervous. The email ended up sounding okay, and I figured I couldn't do much better... so I sent it. I was so happy the next day when I got the reply. He already knew a lot about the things that I was involved in, per google. Funny thing is, that was how I was keeping tabs on him too. Sunday night he called me. He was nervous too, so that made it a lot better. I have a brother who's nine and a little baby sibling too! It was really good to talk to him. I know that everyone was a bit nervous and jealous at my house, but I feel a little more complete. I think now that I'm older I can understand why certain choices were made so I'm not so angry anymore.
Sorry I've not been posting a lot lately. Life just feels so hectic, you know?
Theron is totally trying to help me figure out how to take care of my hands and arthritis. I think maybe he's scared too a little... I'm super scared, but I try not to show it, especially for him and Kelsey. She has this too, after all, and I don't want her to be afraid of turning out like me the rest of her life.
School is going great. I'm having a lot of fun. Kim is the nicest teacher I think I've ever had, and I really like having her as a friend too.
While it gets really tiring working two jobs, I'm okay with it. I'm bringing in pretty good money right now. Almost got my credit card payed off and starting to save up for my first car! Kmart isn't being so bad now either - now that Grrr knows that I can do layouts, she respects me a little more I think... which is sooo nice. Not to mention it's nice to have Nando & Lucas back from their various trips. Although I never get to see Megan anymore :'( She's going to Jamaica with her mom later this month, and totally not taking me! *pout* I suppose I could go next year... :)
I'm kinda nervous for my mom. She has to drive to the University of Michigan tomorrow for training for her other job and the car is crap... and so is the weather. I know that she'll be okay, but she still worries me... not to mention that's a whole week without mom... so I kinda have to be mom... which isn't easy if you're not super-human.
I got to talk to my real dad for the first time this weekend. It was a little awkward, but it went well I think. Theron had just gone to bed and I thought maybe I'd just write Chris an email. I'd been meaning to contact him for quite some time, but was entirely too nervous. The email ended up sounding okay, and I figured I couldn't do much better... so I sent it. I was so happy the next day when I got the reply. He already knew a lot about the things that I was involved in, per google. Funny thing is, that was how I was keeping tabs on him too. Sunday night he called me. He was nervous too, so that made it a lot better. I have a brother who's nine and a little baby sibling too! It was really good to talk to him. I know that everyone was a bit nervous and jealous at my house, but I feel a little more complete. I think now that I'm older I can understand why certain choices were made so I'm not so angry anymore.
Sorry I've not been posting a lot lately. Life just feels so hectic, you know?
Friday, December 28, 2007
Damn Knee
That's right, my left knee officially sucks.
Ugh. All night it was difficult to sleep because of my knee. This morning, I knew I was in real trouble though. When it hurts to get up and go to the bathroom because your knee doesn't want to move, that's pretty sad.
Long story short, I ended up wrapping my knee and crying in my mom's room... then unwrapping my knee because it didn't make it any better and probably hurt it worse. The pain kept getting worse, as did my fears about my knee. It's never really hurt quite this bad before - even when it was -50 degrees Fahrenheit and I had to be outside.
Lately it's been feeling as though my leg from the kneecap down was dead, although I had full control over it and it worked. I remember when I was little and first learning about all the other children with JRA who had to be in a wheelchair before age 8. I was determined to stay out of one. Right now, my biggest fear is that I'll be in one sooner than my 40s, 50s, or 60s... much much sooner.
The thought of having to continue school in a wheelchair absolutely frightens me. Carroll isn't wheelchair accessible at all... not many schools are these days, which is a pretty sad commentary on our world. So then I'd lose my scholarships there. Gah, I don't even want to think about it anymore.
I ended up taking one of my dad's hydrocodone pills. I hate taking them, but the pain was just so bad. I don't like being high, feeling that way. It feels wrong.
I hope it feels better in the morning. I wish Theron was here to hold me and tell me I'll be okay. I always seem to be stronger with him around, braver too.
Ugh. All night it was difficult to sleep because of my knee. This morning, I knew I was in real trouble though. When it hurts to get up and go to the bathroom because your knee doesn't want to move, that's pretty sad.
Long story short, I ended up wrapping my knee and crying in my mom's room... then unwrapping my knee because it didn't make it any better and probably hurt it worse. The pain kept getting worse, as did my fears about my knee. It's never really hurt quite this bad before - even when it was -50 degrees Fahrenheit and I had to be outside.
Lately it's been feeling as though my leg from the kneecap down was dead, although I had full control over it and it worked. I remember when I was little and first learning about all the other children with JRA who had to be in a wheelchair before age 8. I was determined to stay out of one. Right now, my biggest fear is that I'll be in one sooner than my 40s, 50s, or 60s... much much sooner.
The thought of having to continue school in a wheelchair absolutely frightens me. Carroll isn't wheelchair accessible at all... not many schools are these days, which is a pretty sad commentary on our world. So then I'd lose my scholarships there. Gah, I don't even want to think about it anymore.
I ended up taking one of my dad's hydrocodone pills. I hate taking them, but the pain was just so bad. I don't like being high, feeling that way. It feels wrong.
I hope it feels better in the morning. I wish Theron was here to hold me and tell me I'll be okay. I always seem to be stronger with him around, braver too.
Monday, November 5, 2007
Ahhh, the weekend update...
So my weekend was alright, I suppose. I've been super busy... well, and super lazy.
Saturday went well enough. Aside from getting some stuff at the store, there wasn't a whole lot of eventful stuff. Theron and I cleaned my room. It was nice to have him there to help motivate me, but at the same time, I feel bad... I should be able to motivate myself... I'm just super lazy and lethargic, I suppose. X-P
Oregon whomped Arizona State Saturday night, moving them to the number 3 spot in BCS standings. They play Arizona there Thursday night and in UCLA the Saturday after next before coming back home to play the civil war game against Oregon State. This game is legendary, for those of you who have no clue about it. Almost every year, these are the first tickets to get sold out. Go ducks!
We made dirt cake Saturday night, which was supremely fun. I got to crush all the loverly Oreos, but I didn't do a great job... We put sooo many gummy worms in there. I think the piece I had last night had like 5 or 6 in it!
Sunday was a terriblie day at work. I found out the price changer girl - who never does her job right - and my boss were talking about how I never do my job right. Between that, and then price changer girl telling me that I'm not allowed to put up the ad signs unless they're ringing up right, even though it's HER job to put them in the damn computer, I've just about had it. Poor Latanya was standing there listening to stupid girl talk to me like that, and SHE almost walked out. No one there is happy. Everyone is tired of trying to pretend, and our boss doesn't treat anyone right at all. She actually said to me the other day that this is not a job that requires thinking!!! I turned to Morgan (one of the newer girls), and she was just as floored as I was. I'm a college student - I've been trained for years TO think! Not gonna stop just stupid lady says so. It was so bad that, when I got off work, Theron and I drove around looking for places that were hiring. I'm gonna go apply at Tallinger's tonight after work. I know it'll probably mean a dock in pay, but I'll take it as long as the atmosphere is a little bit better.
Last night, Theron and I ate a whole box of cereal for dinner. It was pretty amusing, I thought.
On an even worse note, my arthritis is being terrible. I'm trying not to show it in front of Theron, because I don't want to freak him out or look like a complete doofus. I don't think it's gonna stop being this way for a while now though, so maybe it's time to break out the crazy tape.
I keep dropping things midway through holding on to them... My eyes are starting to get funky again... I actually had to get eye drops the other day. My ankle, which was already bad from me twisting it trying to be all cool and sportsy (which was a bad move, knowing my klumsiness), is hurting worse now. Thankfully, that's the only joint that's being attacked right now, but it's my friggin' ankle! Not a good thing to have problems with. Hopefully it gets better soon, but seeing as it's getting colder and colder, I highly doubt that'll happen. I had to start taking my Aleve again, which means I'm gonna start getting sick to my stomach.
Excitingly though, the main gene responsible for Rheumatoid Arthritis was found in the past couple of days. Maybe there'll be a cure or better treatment by the time I have kids so that they don't have to go through as much of this as I have. It's bad enough to have watched my little sister get sicker... I don't want to see this happen to anyone anymore. Stupid pain, grrrr!
Saturday went well enough. Aside from getting some stuff at the store, there wasn't a whole lot of eventful stuff. Theron and I cleaned my room. It was nice to have him there to help motivate me, but at the same time, I feel bad... I should be able to motivate myself... I'm just super lazy and lethargic, I suppose. X-P
Oregon whomped Arizona State Saturday night, moving them to the number 3 spot in BCS standings. They play Arizona there Thursday night and in UCLA the Saturday after next before coming back home to play the civil war game against Oregon State. This game is legendary, for those of you who have no clue about it. Almost every year, these are the first tickets to get sold out. Go ducks!
We made dirt cake Saturday night, which was supremely fun. I got to crush all the loverly Oreos, but I didn't do a great job... We put sooo many gummy worms in there. I think the piece I had last night had like 5 or 6 in it!
Sunday was a terriblie day at work. I found out the price changer girl - who never does her job right - and my boss were talking about how I never do my job right. Between that, and then price changer girl telling me that I'm not allowed to put up the ad signs unless they're ringing up right, even though it's HER job to put them in the damn computer, I've just about had it. Poor Latanya was standing there listening to stupid girl talk to me like that, and SHE almost walked out. No one there is happy. Everyone is tired of trying to pretend, and our boss doesn't treat anyone right at all. She actually said to me the other day that this is not a job that requires thinking!!! I turned to Morgan (one of the newer girls), and she was just as floored as I was. I'm a college student - I've been trained for years TO think! Not gonna stop just stupid lady says so. It was so bad that, when I got off work, Theron and I drove around looking for places that were hiring. I'm gonna go apply at Tallinger's tonight after work. I know it'll probably mean a dock in pay, but I'll take it as long as the atmosphere is a little bit better.
Last night, Theron and I ate a whole box of cereal for dinner. It was pretty amusing, I thought.
On an even worse note, my arthritis is being terrible. I'm trying not to show it in front of Theron, because I don't want to freak him out or look like a complete doofus. I don't think it's gonna stop being this way for a while now though, so maybe it's time to break out the crazy tape.
I keep dropping things midway through holding on to them... My eyes are starting to get funky again... I actually had to get eye drops the other day. My ankle, which was already bad from me twisting it trying to be all cool and sportsy (which was a bad move, knowing my klumsiness), is hurting worse now. Thankfully, that's the only joint that's being attacked right now, but it's my friggin' ankle! Not a good thing to have problems with. Hopefully it gets better soon, but seeing as it's getting colder and colder, I highly doubt that'll happen. I had to start taking my Aleve again, which means I'm gonna start getting sick to my stomach.
Excitingly though, the main gene responsible for Rheumatoid Arthritis was found in the past couple of days. Maybe there'll be a cure or better treatment by the time I have kids so that they don't have to go through as much of this as I have. It's bad enough to have watched my little sister get sicker... I don't want to see this happen to anyone anymore. Stupid pain, grrrr!
Tuesday, October 23, 2007
Gah!
It's cold. It wouldn't really bother me except that my metabolism is all low because I haven't eaten yet today, and my sweater - which looked so warm when I bought it - is crap! I should just take it back later...
My body is aching so bad. Not sure whether it's the cold or the fact that I walked so much yesterday... Or that I'm hungry and cranky, and maybe trying to find things to complain about to a whole new audience!
I don't have to work again until Friday night. Hopefully my boss won't be there. Grrr is my manager at Kmart (for safety's sake - thanks Theron). Outside of work, she's an awesome lady - relatively easy to get along with. But when I'm at work... it's a totally different story. It feels like she doesn't think I'm capable of things. I am! I work my butt off everyday that I'm there. I'm the soft home team lead (basically, I manage towels, sheets, pillows, curtains, and other domestical items). I am the only one that does anything in that department. I used to have someone in charge of me, but now I report directly to the managers. They're not hiring anyone else to be my boss either, so I'll be alone there forever! It's extremely hard to take care of all of that and go to school full time. I have a minimum of 20 hours that I have to work in that department, and on top of that I end up doing a million other things. I know how to do everything in that store, so everyone asks me to cover their breaks and such. It's not my fault that there's no one on the floor - let alone anyone who knows how to do hunting licenses or has override numbers or knows where everything is in jewelry! I make more than people that have been there for years - which really actually makes me feel really bad - but it doesn't seem like I'm appreciated by Grrr otherwise. I bake cookies and buy pizza to share with everyone so they're happy, because she's brought down the morale so much that it only takes small things like that... All the best people have started to leave or are looking to, because they can't stand her and the way she manages the place. The store keeps getting worse and worse, because no one cares about having their job anymore - no one cares if they do well, because they hate everything that store is now. I do too, but I at least try to work a little bit. I guess I just feel stretched thin, and being unappreciated isn't helping it.
School is great. I love being in college, and so close to my goal of teaching. I just wish I had figured out that's what I wanted last year, so that I didn't have to stay here longer. My Calc 1 class hasn't been going so well, but hopefully since I'm doing the homework now, and I understand more, I'll be able to do better on the test tomorrow. Crap! I gotta catch up on that fast!
Theron is so cute. I'm sure he's gonna be all, "Why are you bragging about me? Now the people on my baseball blog will think I'm all crazy...ier..." But he really is. He's perfect for me, and it's awesome. I really feel like I have a center now, and whether or not he is it or helped me find it, I'm super grateful.
I got all these Buddhist books the other day, and I'm slowly working on them. It really is mostly what I've believe my whole life. I don't necessarily believe everything, but most of it. Reincarnation? Sure. No soul attached to the reincarnation thing? Not so much. Otherwise, you wouldn't really remember it, right? Not that you do anyway, but when you achieve Nirvana I mean.
For now, I'm going to go get some hot chocolate... or some coffee... maybe Theron won't notice that I had some with my coffee breath... I doubt it though.
Enjoy this fascinating tidbit on JRA:
Many famous people have suffered from RA. Pierre-Auguste Renoir, the 19th-century painter, developed RA in mid-life. His hands became so crippled that his paint brush had to be wedged between his fingers. However, he kept his sense of humour. He joked that he never finished a nude painting until he thought he could pinch it!
Comedy queen Lucille Ball of "I Love Lucy" fame had rheumatoid arthritis when she was 17 but that didn’t stop her from pursuing her dreams. Her first attack came while she was working as a model for Hattie Carnegie’s famous dress shop. She felt excruciating pain in her legs and the doctor who saw her said she would probably end up in a wheelchair as a result of the disease. Lucy was later referred to an orthopedic clinic near Columbia University where she was given experimental "horse serum" shots for several weeks that drained her money but didn’t stop the pain. Frightened and discouraged, she returned to her parent’s home in Jamestown, New York. "Gradually the pain subsided and finally one day with the support of her father and doctor, Lucy stood up, feeling wobbly and unsteady. Her left leg was now somewhat shorter than her right leg and it pulled sideways. To correct this, she began wearing a 20 - pound weight in one of her black orthopedic shoes. Though Lucy had residual pain she was able to take a part offered her with the Jamestown Players and she later returned to New York City in search of her dreams," said Carol and Richard Eustice - the people behind About.com’s Arthritis Guide who both have rheumatoid arthritis as well.
Hollywood star Kathleen Turner was so bothered by the pain of rheumatoid arthritis that she had suicidal thoughts.Rosalind Russell, star of the silver screen, had severe RA and did much to garner support for the advancement of research into this disease.
Aida Turturro- Aida Turturro plays Tony Soprano's conniving sister, Janice, on the HBO series "The Sopranos" , AND has suffered from rheumatoid arthritis since she was a child.
Camryn Manheim- "I went to several doctors before visiting a rheumatologist who finally diagnosed the painful swelling and stiffness in my joints as rheumatoid arthritis," says Camryn. "It took close to eight months for me to get properly diagnosed and treated. I lost valuable time, and the joint damage I sustained is irreversible. I'm sharing my story with the hope that it will inspire others to take control of their rheumatoid arthritis by learning more about the disease and working with a rheumatologist to manage it." Camryn first noticed the pain and stiffness in her fingers while she was practicing sign language, a passion of hers for more than 20 years. Initially, Camryn was told the pain was due to aging, but because of the severity of her symptoms, Camryn knew it was something more. It wasn't until Camryn conducted her own research and consulted with a rheumatologist that she received a proper diagnosis and found a treatment regimen that worked for her. Now, Camryn's symptoms are under control and she again has the energy to enjoy her normal daily activities, like teaching sign language and playing with her four-year-old son. Camryn's rheumatologist also is managing her treatment process closely to ensure she does not endure additional joint destruction.
-I got this from Michelle's Myspace page on Fighting Rheumatoid Arthritis - check it out on my JRA links list.
My body is aching so bad. Not sure whether it's the cold or the fact that I walked so much yesterday... Or that I'm hungry and cranky, and maybe trying to find things to complain about to a whole new audience!
I don't have to work again until Friday night. Hopefully my boss won't be there. Grrr is my manager at Kmart (for safety's sake - thanks Theron). Outside of work, she's an awesome lady - relatively easy to get along with. But when I'm at work... it's a totally different story. It feels like she doesn't think I'm capable of things. I am! I work my butt off everyday that I'm there. I'm the soft home team lead (basically, I manage towels, sheets, pillows, curtains, and other domestical items). I am the only one that does anything in that department. I used to have someone in charge of me, but now I report directly to the managers. They're not hiring anyone else to be my boss either, so I'll be alone there forever! It's extremely hard to take care of all of that and go to school full time. I have a minimum of 20 hours that I have to work in that department, and on top of that I end up doing a million other things. I know how to do everything in that store, so everyone asks me to cover their breaks and such. It's not my fault that there's no one on the floor - let alone anyone who knows how to do hunting licenses or has override numbers or knows where everything is in jewelry! I make more than people that have been there for years - which really actually makes me feel really bad - but it doesn't seem like I'm appreciated by Grrr otherwise. I bake cookies and buy pizza to share with everyone so they're happy, because she's brought down the morale so much that it only takes small things like that... All the best people have started to leave or are looking to, because they can't stand her and the way she manages the place. The store keeps getting worse and worse, because no one cares about having their job anymore - no one cares if they do well, because they hate everything that store is now. I do too, but I at least try to work a little bit. I guess I just feel stretched thin, and being unappreciated isn't helping it.
School is great. I love being in college, and so close to my goal of teaching. I just wish I had figured out that's what I wanted last year, so that I didn't have to stay here longer. My Calc 1 class hasn't been going so well, but hopefully since I'm doing the homework now, and I understand more, I'll be able to do better on the test tomorrow. Crap! I gotta catch up on that fast!
Theron is so cute. I'm sure he's gonna be all, "Why are you bragging about me? Now the people on my baseball blog will think I'm all crazy...ier..." But he really is. He's perfect for me, and it's awesome. I really feel like I have a center now, and whether or not he is it or helped me find it, I'm super grateful.
I got all these Buddhist books the other day, and I'm slowly working on them. It really is mostly what I've believe my whole life. I don't necessarily believe everything, but most of it. Reincarnation? Sure. No soul attached to the reincarnation thing? Not so much. Otherwise, you wouldn't really remember it, right? Not that you do anyway, but when you achieve Nirvana I mean.
For now, I'm going to go get some hot chocolate... or some coffee... maybe Theron won't notice that I had some with my coffee breath... I doubt it though.
Enjoy this fascinating tidbit on JRA:
Many famous people have suffered from RA. Pierre-Auguste Renoir, the 19th-century painter, developed RA in mid-life. His hands became so crippled that his paint brush had to be wedged between his fingers. However, he kept his sense of humour. He joked that he never finished a nude painting until he thought he could pinch it!
Comedy queen Lucille Ball of "I Love Lucy" fame had rheumatoid arthritis when she was 17 but that didn’t stop her from pursuing her dreams. Her first attack came while she was working as a model for Hattie Carnegie’s famous dress shop. She felt excruciating pain in her legs and the doctor who saw her said she would probably end up in a wheelchair as a result of the disease. Lucy was later referred to an orthopedic clinic near Columbia University where she was given experimental "horse serum" shots for several weeks that drained her money but didn’t stop the pain. Frightened and discouraged, she returned to her parent’s home in Jamestown, New York. "Gradually the pain subsided and finally one day with the support of her father and doctor, Lucy stood up, feeling wobbly and unsteady. Her left leg was now somewhat shorter than her right leg and it pulled sideways. To correct this, she began wearing a 20 - pound weight in one of her black orthopedic shoes. Though Lucy had residual pain she was able to take a part offered her with the Jamestown Players and she later returned to New York City in search of her dreams," said Carol and Richard Eustice - the people behind About.com’s Arthritis Guide who both have rheumatoid arthritis as well.
Hollywood star Kathleen Turner was so bothered by the pain of rheumatoid arthritis that she had suicidal thoughts.Rosalind Russell, star of the silver screen, had severe RA and did much to garner support for the advancement of research into this disease.
Aida Turturro- Aida Turturro plays Tony Soprano's conniving sister, Janice, on the HBO series "The Sopranos" , AND has suffered from rheumatoid arthritis since she was a child.
Camryn Manheim- "I went to several doctors before visiting a rheumatologist who finally diagnosed the painful swelling and stiffness in my joints as rheumatoid arthritis," says Camryn. "It took close to eight months for me to get properly diagnosed and treated. I lost valuable time, and the joint damage I sustained is irreversible. I'm sharing my story with the hope that it will inspire others to take control of their rheumatoid arthritis by learning more about the disease and working with a rheumatologist to manage it." Camryn first noticed the pain and stiffness in her fingers while she was practicing sign language, a passion of hers for more than 20 years. Initially, Camryn was told the pain was due to aging, but because of the severity of her symptoms, Camryn knew it was something more. It wasn't until Camryn conducted her own research and consulted with a rheumatologist that she received a proper diagnosis and found a treatment regimen that worked for her. Now, Camryn's symptoms are under control and she again has the energy to enjoy her normal daily activities, like teaching sign language and playing with her four-year-old son. Camryn's rheumatologist also is managing her treatment process closely to ensure she does not endure additional joint destruction.
-I got this from Michelle's Myspace page on Fighting Rheumatoid Arthritis - check it out on my JRA links list.
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