Hello everyone!
Sorry it's been so long since I've written, I just got my first job every and I'm work 40-45 hours a week! I'm a nanny for a 17 month old little girl. I come home and want to go right to bed! It's rough! But hey, it's a job! So our neighbor thought I was a 13 year old beauty queen.. but I'm not.. I'm a 22 year old college graduate band kid.. haha! But I suppose it's nice to know I look young.. but 13, that means I look like I'm in puberty! AH! Oh well..
Exciting news!! Camp Boggy Creek is this weekend! I'm sooooo stoked! I can't even explain!!! It's Friday to Sunday and Saturday night there's a dance and the theme is Rock Star. I look like an 80's pop star. It's amazing! I might post a picture! (Depending on if my mommy says ok!)
More exciting news!!! Well brief story first, my stepdad has been around since I was 1 year old. And I haven't seen my biological father since 5th grade. So for father's day I asked my stepdad to adopt me! Well not really ask because I already submitted the forms.. haha! But we finally got our adoption date and its' Oct 28th at 9:30! I cannot wait!!! It will be awesome!! Then that night we're participating the Arthritis Foundation Creaky Bones walk!!! It's on the St.Pete Pier at night, it should be amazing!!!
More exciting news too!! Our Jingle Bell Run team, Team Kelley (feel free to join or donate!) is only 45.00 away from 1,000 dollars!! Our goal is 2,500! I can't wait to do it! It is going to be such an amazing experience. Our theme is "All I want for Christmas is a Cure" Now you should feel obligated to donate! (just kidding!) I think we'll pass our goal which means so much to me!!
Funny story, at least 3 people on our street have Arthritis and take Enbrel, which is like a miracle drug for patients! Most people who were in a wheel chair within about 2 months of taking it could walk!!! No lie!! Isn't that amazing! I was on it for 3 years, and it worked really well, it just didn't work long enough for me. (It's usually a shot once a week or twice a week or as needed, I was at about 70% pain free, but once you go more than like 50mg a week it becomes really dangerous so I had to switch to another drug, Humira)
Less exciting news, let's talk about my bones. So since I was diagnosed when I was 15 years old I've always had really bad back pain but Rheumatoid Arthritis usually isn't in the back so the doctors just kind pushed it aside. But I got a crazy amount of x-rays of my back and spine and it didn't show anything unusal so I'm getting an MRI done in two weeks. So hopefully we'll find out why it hurts so much! (It feels like when you push on a really painful bruise, but its constant and its from like the bottom of where a bra would be to the top of where pants would be. So the Lumbar region of the spine) The pain sometimes goes away when I lay down but not all of the time. Stupid spine!!
Drugs. Let's talk about drugs. So I already mentioned I did Enbrel for a while, great drug, I did it with methotrexate, both of which are shots, at one point I was doing 2 shots of Enbrel (25mg, and 50mg) and 2 shots of methotrexate (5cc) a week! Which was a lot! And I would always forget to bring in my sharps boxes to the doctors office so they would pile up in my room! Haha! I look like such a druggie! But anyway, so I tried this other shot called Humira, and its a shot once every other week. But there's a lot of pain in the week that I don't do that shot, which is not good. We're trying to get my pain control to 100% but now it's around 60% :( So sad. But we're looking at the option of an IV drip/Infusion that would be done every 4-8 weeks and the dosage would vary every time depending on the pain. I would have to go to the doctors office and sit in the infusion room for 2-3 hours. Which doesn't sound fun, but I'll try it!! I'm sick of hurting! The pain is starting to effect my sleep a little bit, but now that I'm working by the time I go to bed I'm usually pooped and pass out! My mom and I are looking for an acupuncturist (is that what they are called?) I'd like to try acupuncture, it seems to work for some people. At this point I'll try anything!
Bones. So my bones, starting to be lack of bones! So I have bunions on both feet. (For those who don't know what they are it's where the joint of the big toe, that bone grows outward a little bit, extra bone growth, which causes the toe to shift and it's pretty painful. (Here's a website and some pictures https://health.google.com/health/ref/Bunions a lot of old people have them) Anyway, I got surgery on my right foot when I was 16 and for a while you could feel the part of the bone where they sawed it off and it was completely flat, it was weird! But it's grown back :( but we knew when I got it done that it would have to be repeated every 10-15 years. I'm just a little bit sooner than that. So I'm going to see a podiatrist on Monday to see what we can do. They usually put a rod in it to keep the toe straight. Hopefully we can get that fixed soon because it's really starting to bother me. It's weird, I have it on both feet but only the right bothers me. A lot of women get bunions from wearing pointy toed heels, but I always wore sneakers or converse! Weird.
Recap time! Camp is this weekend! I'm sure I'll write a long and wordy post about how awesome it was! Our jingle bell run team is only $45.00 away from $1000!!!!!
Here's a link to donate or join the Jingle Bell Run! http://jbrtampa.kintera.org/faf/search/searchTeamPart.asp?ievent=427714&lis=1&kntae427714=28E7CAB75098494686859EC1E3980AD7&team=3895391
Quick shout out to my mommy: I love you Mommy! You're the best!
I'll end with one of my favorite quotes:
LOVE EVERYONE, EVEN YOURSELF.
Have a great week!
-Kelley K
ps-I didn't proof read this before I posted it, sorry for the errors...
pps- My random fact about me: I've known I wanted to be a nurse since elementary school! Talk about being a planner! Haha!
ppps- Another random fact: My friends are the best people in the whole world! I'm so lucky to have them in my life!! I love them all!!! I love them more than I love cookies and cherry coke!!!! (Especially, Jessica H, Kristi F, Liz B! Without you three I'd be lost! Stay in my life forever ok?)
Wednesday, October 20, 2010
Sunday, October 10, 2010
Rheumar Has It: Here's a list of random facts and Rheumars!
Hello All!
Here are some random facts about Arthritis that I thought were important and wanted to share. I hope you learn something and pass it on to promote arthritis advocacy!
Random Facts!
1. In 2006, 46 MILLION people had a form of arthritis
1a. There's over 100 forms of arthritis
2. It is the leading cause of disability for Americans over 15 years old
3. Arthritis limits everyday events such as getting dressed, bathing and walking for over 7 million Americans
4. Causes 39 million doctor visits (I believe that one! I go to the doctor at least every 6 weeks, but more like every 2-3 weeks!)
4a. Causes more than 1/2 million hospitalizations!
5. This one is crazy, get ready... It costs the U.S Economy $128 BILLION annually!!!!
**This is one of the reasons why advocacy is so important**
6. I am one of the 300,000 children with arthritis (and it sucks!)
7. Arthritis strikes women more than men (I think that it is because of the decreasing amount of estrogen in women's body as they get older, but I'm not really sure why)
8. There's no known cure for it, but there are a lot of treatment options (however a lot of those treatment options make your immune system so low that it takes you body 4 weeks to fight a sinus infection when it should be gone in 1 week- That's a true story, I'm battling week 4 of a sinus infection and after 2 weeks of strong antibiotics, 2 nasal sprays, Zyrtec and Singular I've still got it!)
9. Fatigue is one of the number one complaints. It's because when your body's immune system is attacking itself your body thinks you are sick. And when you're sick you're tired. Your body needs that rest so that it can be strong to fight off the infection/bacteria/virus. But when your body is constantly attacking itself like it is in arthritis you're always tired because your body is trying to become strong. (I hope that makes sense)
(These facts are from http://www.arthritis.org/facts.php)
Common Misconceptions
1. Only old people get it: We know this is a lie! (Look at number 6 of the random facts and you're reading stuff from someone who is 22 and has had Rheumatoid Arthritis for 8 years)
2. Arthritis consists of only minor aches and pains: I'll tell you right now, I've cried many times because the pain is so bad. It feels like your bones are rubbing on each other. My spine feels like its crunching down (I even shrunk 2 inches in 1 year from my spine!) The pain almost feels like when you're really achy when you get the flu, times a million but add some throbbing and put it in all of your joints. (Now some people only have arthritis in a few joints, not everyone is lucky like to me to have it in all of my joints!)
3. "You felt fine yesterday, why so tired today?"; Everyday is different and you go through flare ups that can happen at any time and last for as long as it wants. (A flare up is when one joint area (sometimes more than one) is super inflammed/swollen/really painful. I'm currently having a terrible flare up in my back and I've tried lidocaine patches, cremes, tyenol, advil, everything!! and nothing is working.)
** You might want to get a light snack or munchie before reading #4, it's kinda long, but important**
4 "You have arthritis, you can't do ____": Let me tell you! This one bothers me soooooooooo much!!!! People think that just because you have this disease you can't do anything! Even my mom does this, especially with taking in groceries or unloading the car (sorry mommy, I know you're just being a mom). Just because I have this disease does not mean everything that a "normal" person can do is off limits. We might not be able to get up one morning and randomly run a 5K or pull an all nighter but we can do everything that you can do with a few minor adjustments. This is the one reason why I'm not honest when my family or friends ask me how my pain is. If I tell them the truth they'll feel sorry for me and treat me differently. I do not want that!!! The thing with arthritis is that you cannot let it define you and you cannot let it stop you. If you do either one of those things it's like giving up before the fight even started. With arthritis you have to do everything you want to do, you just have to know your own limits. You have to set your goals high and not be scared to set them high!
If you're curious on how this is diagnosed here's a link: http://arthritis.about.com/od/diagnostic/a/diagnosis.htm
That's all for now! I hope you all had a great weekend! I sure did! FSU beat Miami! They are now ranked number 16! (Gators are 22 and Miami isn't even ranked! Making FSU the #1 team in Florida for the first time since 2005) Rays beat the Rangers and are going to game 5 of the ADLS!
-Kelley K
ps-I think I'm going to end every post with a random fact about me. So here's one! I collect postcards! If you go anywhere send me one!! (please!)
Here are some random facts about Arthritis that I thought were important and wanted to share. I hope you learn something and pass it on to promote arthritis advocacy!
Random Facts!
1. In 2006, 46 MILLION people had a form of arthritis
1a. There's over 100 forms of arthritis
2. It is the leading cause of disability for Americans over 15 years old
3. Arthritis limits everyday events such as getting dressed, bathing and walking for over 7 million Americans
4. Causes 39 million doctor visits (I believe that one! I go to the doctor at least every 6 weeks, but more like every 2-3 weeks!)
4a. Causes more than 1/2 million hospitalizations!
5. This one is crazy, get ready... It costs the U.S Economy $128 BILLION annually!!!!
**This is one of the reasons why advocacy is so important**
6. I am one of the 300,000 children with arthritis (and it sucks!)
7. Arthritis strikes women more than men (I think that it is because of the decreasing amount of estrogen in women's body as they get older, but I'm not really sure why)
8. There's no known cure for it, but there are a lot of treatment options (however a lot of those treatment options make your immune system so low that it takes you body 4 weeks to fight a sinus infection when it should be gone in 1 week- That's a true story, I'm battling week 4 of a sinus infection and after 2 weeks of strong antibiotics, 2 nasal sprays, Zyrtec and Singular I've still got it!)
9. Fatigue is one of the number one complaints. It's because when your body's immune system is attacking itself your body thinks you are sick. And when you're sick you're tired. Your body needs that rest so that it can be strong to fight off the infection/bacteria/virus. But when your body is constantly attacking itself like it is in arthritis you're always tired because your body is trying to become strong. (I hope that makes sense)
(These facts are from http://www.arthritis.org/facts.php)
Common Misconceptions
1. Only old people get it: We know this is a lie! (Look at number 6 of the random facts and you're reading stuff from someone who is 22 and has had Rheumatoid Arthritis for 8 years)
2. Arthritis consists of only minor aches and pains: I'll tell you right now, I've cried many times because the pain is so bad. It feels like your bones are rubbing on each other. My spine feels like its crunching down (I even shrunk 2 inches in 1 year from my spine!) The pain almost feels like when you're really achy when you get the flu, times a million but add some throbbing and put it in all of your joints. (Now some people only have arthritis in a few joints, not everyone is lucky like to me to have it in all of my joints!)
3. "You felt fine yesterday, why so tired today?"; Everyday is different and you go through flare ups that can happen at any time and last for as long as it wants. (A flare up is when one joint area (sometimes more than one) is super inflammed/swollen/really painful. I'm currently having a terrible flare up in my back and I've tried lidocaine patches, cremes, tyenol, advil, everything!! and nothing is working.)
** You might want to get a light snack or munchie before reading #4, it's kinda long, but important**
4 "You have arthritis, you can't do ____": Let me tell you! This one bothers me soooooooooo much!!!! People think that just because you have this disease you can't do anything! Even my mom does this, especially with taking in groceries or unloading the car (sorry mommy, I know you're just being a mom). Just because I have this disease does not mean everything that a "normal" person can do is off limits. We might not be able to get up one morning and randomly run a 5K or pull an all nighter but we can do everything that you can do with a few minor adjustments. This is the one reason why I'm not honest when my family or friends ask me how my pain is. If I tell them the truth they'll feel sorry for me and treat me differently. I do not want that!!! The thing with arthritis is that you cannot let it define you and you cannot let it stop you. If you do either one of those things it's like giving up before the fight even started. With arthritis you have to do everything you want to do, you just have to know your own limits. You have to set your goals high and not be scared to set them high!
If you're curious on how this is diagnosed here's a link: http://arthritis.about.com/od/diagnostic/a/diagnosis.htm
That's all for now! I hope you all had a great weekend! I sure did! FSU beat Miami! They are now ranked number 16! (Gators are 22 and Miami isn't even ranked! Making FSU the #1 team in Florida for the first time since 2005) Rays beat the Rangers and are going to game 5 of the ADLS!
-Kelley K
ps-I think I'm going to end every post with a random fact about me. So here's one! I collect postcards! If you go anywhere send me one!! (please!)
Friday, October 8, 2010
Super important EVENTS!!!
I completely forgot to tell you about important events that you can be apart of!!!!
1. DO BLUE! October 12th is World Arthritis Day! So wear your blue!! No matter where you are!! The Arthritis Foundation is trying to get people to walk the circumference of the earth! 24,900 miles by October 31! Together we can all make it happen! You can log your steps online and so far only 273 have logged 10079.1 miles! So we need your help!! HELP!
Here's a link about it http://www.fightarthritispain.org/index.asp?L1=4&L2=53
2. CREAKY BONES 5K Run/Walk! It's the annual halloween run/walk! It's held at the St.Pete Pier and also in Saraosta Florida (Sorry if you aren't around those areas, event number 3 will be for you!) You can do a 5K run, a 1 mile walk and there's also a kid one too! Dogs can participate too! (But not in the 5K, sorry!) My family and I are doing it, I hear it is incredibly awesome!!!
Here's a link to register for the St.Pete one: http://www.active.com/running/st-petersburg-fl/creaky-bones-vi-5k-runwalkthe-pierst-pete-2010
3. JINGLE BELL RUN! It's the Arthritis Foundation's Jingle Bell Run! Let me tell you!! My family and I are sooooooooooo pumped for the Jingle Bell this year!! It's our first year participating and I can't wait! We have started a team, Team Kelley (if you'd like you join click here http://jbrtampa.kintera.org/faf/search/searchTeamPart.asp?ievent=427714&lis=1&kntae427714=4ADAC04FB3F24D6DB2EB27F58CF10F2E&team=3895391)
Or you can search for our team, Team Kelley. Our goal is to raise $2,500! So far we're at $740.00! And we're still 2 months away! We're going to have super awesome team shirts too! If you don't live in Florida just go to the Arthritis Foundation website (http://www.arthritis.org/jingle-bell-run.php) and find one in your town!
A past event that just proved VERY successful was that the house committee passed the Arthritis bill! Advocacy works!! Here's an article about it http://www.arthritis.org/housecommittee-arthritisbill-2010.php
Rheumar Has It: Only Old People Get Arthritis
Hello Friends!
Welcome to my Blog about Arthritis! Here I will talk about my experiences living with Rheumatoid Arthritis (now the title makes sense, clever right!!) and hopefully I can debunk some myths about arthritis too! First I'll tell you a little about myself. (If you do not know anything about arthritis scroll down to the bottom to the bold heading "What is Arthritis")
About Me!
My name is Kelley and I'm 22 and I have been living with Rheumatoid Arthritis since I was 15. I just graduated from The Florida State University with a Bachelors degree in Family and Child Science and a minor in Psychology. Go Noles! But hopefully I'll be going to nursing school soon! I just got my first job ever today! I'm going to be a nanny for a 17 month old little girl, which should be fun I guess... I'm just excited for the two hour nap time! Oh also something really really exciting.. I'm going to be a Family Pal for Camp Boggy Creek's Arthritis/Rheumatic diseases family weekend! I can't even wait! I feel like I kind of missed out on the camp experience as a child because I got diagnosed late. So this is my chance to go to camp! Here's a link to the Camp Boggy Creek website if you'd like more information on their stuff. http://www.boggycreek.org/2006/home.asp
Myth #1
So let's talk about RA. A lot of responses I get when I tell someone I have arthritis is "but, you're too young to have arthritis" and then I tell them "nope! There's over 300,000 children just in the United States with a form of Arthritis!" (there's over 46 million adults with it too) and then they are always shocked, but at least they are somewhat educated about it now! Some children who have JRA (juvenile rheumatoid arthritis) or other forms of arthritis (Here's a link to all of the forms of it http://orthopedics.about.com/od/arthritis/f/arthritis.htm) who have it have it so bad that they are forced to live their childhood in a wheel chair or with some other forms of support such as canes or braces. Doesn't that suck! It just isn't fair to those children. But those are the reasons why we need to get out there and advocate, educate and inform people!
What is arthritis?
The clinical definition is (according to Google Health): Arthritis is inflammation of one or more joints, which results in pain, swelling, stiffness, and limited movement. There are over 100 different types of arthritis. This link gives you some more information along with pictures and treatment options https://health.google.com/health/ref/Arthritis
If you ask a younger person what it is they will most like say "it sucks." and it often does. Personally I take about 10 pills a day and do a biweekly injection. And depending on how the bones are doing I put on a lidocaine patch on the area or use a cream, depending on the spot, or use a heating pad. I have also had to change my diet, my rheumatologist put me on Mediterranean diet. (Here's a link about the diet http://www.americanheart.org/presenter.jhtml?identifier=4644) Personally I hate it!! You can't have chips, cookies or crackers. Which is hard to stop since that was basically what I was living off of in college! (Don't tell my doctor that she'll yell at me! Haha) But it is an anti inflammatory diet it helped my mom loose about 15 pounds! We're trying to try out some more natural arthritis helpers such as diet and exercise because my mommy is worried about all of chemicals that have been pumped into my body for the past 8 years. One of the biggest things about RA is you have to keep moving!! Staying still/in the same position is not good for the bones and it doesn't feel good!!
I'll stop rambling for now, I hope this was kinda of helpful or entertaining? Feel free to comment and post suggestions or questions! And if you're into cooking check out my cousin's blog http://womanwithablowtorch.blogspot.com/
-Kelley K
Welcome to my Blog about Arthritis! Here I will talk about my experiences living with Rheumatoid Arthritis (now the title makes sense, clever right!!) and hopefully I can debunk some myths about arthritis too! First I'll tell you a little about myself. (If you do not know anything about arthritis scroll down to the bottom to the bold heading "What is Arthritis")
About Me!
My name is Kelley and I'm 22 and I have been living with Rheumatoid Arthritis since I was 15. I just graduated from The Florida State University with a Bachelors degree in Family and Child Science and a minor in Psychology. Go Noles! But hopefully I'll be going to nursing school soon! I just got my first job ever today! I'm going to be a nanny for a 17 month old little girl, which should be fun I guess... I'm just excited for the two hour nap time! Oh also something really really exciting.. I'm going to be a Family Pal for Camp Boggy Creek's Arthritis/Rheumatic diseases family weekend! I can't even wait! I feel like I kind of missed out on the camp experience as a child because I got diagnosed late. So this is my chance to go to camp! Here's a link to the Camp Boggy Creek website if you'd like more information on their stuff. http://www.boggycreek.org/2006/home.asp
Myth #1
So let's talk about RA. A lot of responses I get when I tell someone I have arthritis is "but, you're too young to have arthritis" and then I tell them "nope! There's over 300,000 children just in the United States with a form of Arthritis!" (there's over 46 million adults with it too) and then they are always shocked, but at least they are somewhat educated about it now! Some children who have JRA (juvenile rheumatoid arthritis) or other forms of arthritis (Here's a link to all of the forms of it http://orthopedics.about.com/od/arthritis/f/arthritis.htm) who have it have it so bad that they are forced to live their childhood in a wheel chair or with some other forms of support such as canes or braces. Doesn't that suck! It just isn't fair to those children. But those are the reasons why we need to get out there and advocate, educate and inform people!
What is arthritis?
The clinical definition is (according to Google Health): Arthritis is inflammation of one or more joints, which results in pain, swelling, stiffness, and limited movement. There are over 100 different types of arthritis. This link gives you some more information along with pictures and treatment options https://health.google.com/health/ref/Arthritis
If you ask a younger person what it is they will most like say "it sucks." and it often does. Personally I take about 10 pills a day and do a biweekly injection. And depending on how the bones are doing I put on a lidocaine patch on the area or use a cream, depending on the spot, or use a heating pad. I have also had to change my diet, my rheumatologist put me on Mediterranean diet. (Here's a link about the diet http://www.americanheart.org/presenter.jhtml?identifier=4644) Personally I hate it!! You can't have chips, cookies or crackers. Which is hard to stop since that was basically what I was living off of in college! (Don't tell my doctor that she'll yell at me! Haha) But it is an anti inflammatory diet it helped my mom loose about 15 pounds! We're trying to try out some more natural arthritis helpers such as diet and exercise because my mommy is worried about all of chemicals that have been pumped into my body for the past 8 years. One of the biggest things about RA is you have to keep moving!! Staying still/in the same position is not good for the bones and it doesn't feel good!!
I'll stop rambling for now, I hope this was kinda of helpful or entertaining? Feel free to comment and post suggestions or questions! And if you're into cooking check out my cousin's blog http://womanwithablowtorch.blogspot.com/
-Kelley K
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