For a good 9 months now my Jra has been flaring but 6 of those months showed no inflammation indicator for my doctors to say well somethings not working. 3 months ago i go for my rheumatologist visit and explain tht i don't think the orencia is working i dont feel good! the answer well ur blood work from 3 weeks ago looks good lets wait and see about the orencia..HUH!!!!! 3 months later...I'm worse..I have to take pain pills everyday just to function, im tired and all i want to do is feel better! So i visit the doc yesterday and guess what the bloodwork from 3 months ago i had done after my visit SHOWED INFLAMMATION! For two months I got worse when i could be on a med by now feeling better! Uggghhh Ive had jra for 14 yrs now i think i kno my body by now...doctors listen to us! So now i'm trying a new medicine BUT..it must be approved first..so all of this means that i have at least another month til possibly any feeling better is gonna happen. although im used to this its never easy to just be in pain everyday all the time..all over your body. You almost don't want to breathe cause just doing that causes pain. I miss out on hanging with my friends and everyone thinks cause ur not well enough to go out that ur not well enough for them to come over. Thats a complete lie. If u have a friend or family member that is stuck home because of a physical ailment offer to come visit. it would make us happier than u know!
so for now i just have to wait and let the health system do their thing...I pray that the pain lessons be4 then and i can get back to pursue my acting and being with my friends.
Saturday, August 15, 2009
Thursday, March 5, 2009
Its Been A Long Time..
Its been almost a year since I last wrote and it has been a roller coaster of a ride. Summer was amazing filled with concerts and my first time to Camp J.R.A It is a camp for kids that have rheumatic disease.s Most of the kids have juvenile rheumatoid artrhtis like me. The camp and the people there were amazing. It is a place for kids with a disease but you go there and no one sees any diseases. It is the only place I have ever felt normal and im sure its the same for many of the kids and adults. The kids and their strength are remarkable! I wish I had the strength they have when I was their age. If any of you campers read this.. You are AMAZING!
Summer ended and so did my online schooling. At 22 I finally achieved my associate's degree in psychology. It took me a while but when I got really sick in Jan of 07 I didn't want the arthritis to delay anymore of my schooling. in the Summer I signed up with an online school and fought my way throught the weak and sore days to come out on top. In January 09 I continued my education for my bachelor's at Montclair State University.
Right now Im in my dorm room typing away. Although I am only two hours from my family in south jersey it is my first time really being on my own. Its exhilirating, new, but also still scary and a bit lonely. It's hard to have the new people you live with understand that im not in my room all the time because im a hermit but that im in pain, tired, and weak. My room is where I am most comfortable. Being up here at school has been a harder struggle because my arthritis is acting up. My fingers feel like rubberbands are wrapped around the joints, my knees feel like they could buckle, and my energy is nonexistent. Everything I planed to do up here is put on hold until I can get my health better. Combine my health issues with the work load of a full time student and you get moments of full blown crying fits..
There are times in life that have to remind us how strong we are and being away at school as reminded me of my strength and determination. I have learned even with pain I can take care of myself and I am even stronger than I thought I was. Right now I am trying to just get through the semester and I am looking forward to summer. The concerts, warmer weather and the beach are all the things I love!
Summer ended and so did my online schooling. At 22 I finally achieved my associate's degree in psychology. It took me a while but when I got really sick in Jan of 07 I didn't want the arthritis to delay anymore of my schooling. in the Summer I signed up with an online school and fought my way throught the weak and sore days to come out on top. In January 09 I continued my education for my bachelor's at Montclair State University.
Right now Im in my dorm room typing away. Although I am only two hours from my family in south jersey it is my first time really being on my own. Its exhilirating, new, but also still scary and a bit lonely. It's hard to have the new people you live with understand that im not in my room all the time because im a hermit but that im in pain, tired, and weak. My room is where I am most comfortable. Being up here at school has been a harder struggle because my arthritis is acting up. My fingers feel like rubberbands are wrapped around the joints, my knees feel like they could buckle, and my energy is nonexistent. Everything I planed to do up here is put on hold until I can get my health better. Combine my health issues with the work load of a full time student and you get moments of full blown crying fits..
There are times in life that have to remind us how strong we are and being away at school as reminded me of my strength and determination. I have learned even with pain I can take care of myself and I am even stronger than I thought I was. Right now I am trying to just get through the semester and I am looking forward to summer. The concerts, warmer weather and the beach are all the things I love!
Tuesday, May 27, 2008
The Future
I'm not very good at living for the day. I'm constantly planning for something whether it is the next day or 10 yrs from now. Along with this I feel like I need to achieve everything now at this very minute. I think I do this because I can't predict my health an hour from now, a day, or a year from now. It drives me crazy because what if I could do that something now while I am semi-healthy and I don't. The opportunity may come again but I'll be too sick to do it and the opportunity will never come a second time. most people don't have to face the fact that they may not be able to walk in the future or hold a real job. They plan for marriage and kids and some day a fun retirement. I plan for knee and hip replacements. I worry how having kids may destroy my body even more. I worry of being in a wheelchair again. I'm only 21 yrs old and this is what I must worry about. It's all been catching up to me lately and I'm trying to remember to just live for the day.
Living in the moment for me began to be difficult when for months I would be held up on the couch unable to play with my younger sister or attend school and see my classmates. My life was exactly like the groundhog's day movie and sometimes still is. Planning or imaging the future was my only escape. My life in the future is so much exciting than the present. I have done this for 12 years now and it's almost like an addiction. When I can't plan or am unorganized about something I must do I get anxious and feel uncomfortable. How do I change this? Do I want to change this?
Being a psych major has been exciting because not only do I understand others more but I'm beginning to understand me as well. It's scary but exciting at the same time. I don't know what the future will bring for me but I know what I want. I think if I can mix a bit of what I want with the flow of life I can create a good combination. I guess I just need to sit back a little bit and not try to control everything in my life so much. So lets see how that works!!!
Living in the moment for me began to be difficult when for months I would be held up on the couch unable to play with my younger sister or attend school and see my classmates. My life was exactly like the groundhog's day movie and sometimes still is. Planning or imaging the future was my only escape. My life in the future is so much exciting than the present. I have done this for 12 years now and it's almost like an addiction. When I can't plan or am unorganized about something I must do I get anxious and feel uncomfortable. How do I change this? Do I want to change this?
Being a psych major has been exciting because not only do I understand others more but I'm beginning to understand me as well. It's scary but exciting at the same time. I don't know what the future will bring for me but I know what I want. I think if I can mix a bit of what I want with the flow of life I can create a good combination. I guess I just need to sit back a little bit and not try to control everything in my life so much. So lets see how that works!!!
Wednesday, February 20, 2008
People really don't understand how painfull it is!
To no one and everyone,
Havent gootten much read on my blogs but I don't care. this is my place to vent and i can say what I want. Last night I watched the show intervention. On it was a 23 year old woman that had rheumatoid arthritis and had become addicted to pain pills not because she wanted to get high but because she didnt want to feel pain. The family could only see an addict and until a counselor opened their eyes. it was then that they saw someone trying to not feel physical pain. This is a big problem with people. No one truly understands how painful this disease is. Those of us with it tend to look "normal". So of course nothing is wrong right. I have to say I appreciated this documentary so much. I got to look at someone that had the same fingers as me. Someone who walked so slow that struggled with every inch of movement. I got to see someone else struggle with the lift of a car handle and with shutting the car door. I got to see me. Every movement was all the same movements i have done just to move. This documentary helped me to remeber how strong I am and how strong I have been in the past. From anyone who might watch the show I hope it gives more insight into rheumatoid arthritis and how severe it can be. It's not pain that needs to be faked, its there so don't call us fakers. It's a;so a pain that can have us wishing for death. Don't pity us or feel bad for us. Understand us and that will make all the difference in the world!!
Havent gootten much read on my blogs but I don't care. this is my place to vent and i can say what I want. Last night I watched the show intervention. On it was a 23 year old woman that had rheumatoid arthritis and had become addicted to pain pills not because she wanted to get high but because she didnt want to feel pain. The family could only see an addict and until a counselor opened their eyes. it was then that they saw someone trying to not feel physical pain. This is a big problem with people. No one truly understands how painful this disease is. Those of us with it tend to look "normal". So of course nothing is wrong right. I have to say I appreciated this documentary so much. I got to look at someone that had the same fingers as me. Someone who walked so slow that struggled with every inch of movement. I got to see someone else struggle with the lift of a car handle and with shutting the car door. I got to see me. Every movement was all the same movements i have done just to move. This documentary helped me to remeber how strong I am and how strong I have been in the past. From anyone who might watch the show I hope it gives more insight into rheumatoid arthritis and how severe it can be. It's not pain that needs to be faked, its there so don't call us fakers. It's a;so a pain that can have us wishing for death. Don't pity us or feel bad for us. Understand us and that will make all the difference in the world!!
Sunday, December 30, 2007
having arthritis is lonely
Tonight is a hard night to get through. I'm not feeling so well. The two joints in the fingers are swollen and pink in every finger. I can describe the pain as a rubber band being wrapped around the joint so tight that its cutting off blood flow. That pressure and pain is what im feeling. When I walk and put pressure on my right hip it gives me surge of pain that makes my leg collapse. My left foot is also sore. The bones in my foot are so sore that i cant roll the foot in any way. Other sore bones include my right shoulder and collar bone, upper spine and neck, and achy knees. This nasty jersey weather is not working anymore. I need to move to florida! Having this disease is very lonely. In the US only 300,000 kids have Juvenile Rheumatoid Arthritis. Of course I had to be a rarity. Not a lot of people know about nor do they understand it. That is one thing that makes this disease so lonely. It's not just an achy joint. It can be fevers, a rash, anemia, organ problems and so much more. The arthritis alone will make one tired but hell being anemic to knocks you off your feet. Its not so much fun here on the floor. I like to say I live for moments because sometimes this disease is all that it allows. Moments of barely no pain to explore the city for a day or moments of time to have good laughs at the movies with friends. What do I want for the new year??? ........MORE MOMENTS!
regular doctor visit
Friday, was my every 2month visit to the rheumatologist. It wasn't bad but it wasn't great. On July 10 I was 21 so that ment I was no longer able to see my pediatric doctor :(.although I like my new doctor, things were different at the pediatric hospital. I was looked at more closely where as now I almost feel like the doctors I have now are just there to write me perscriptions. Since January of 2007 I have been flaring pretty bad. I'm having difficulty find a medicine that will control my disease. The newest drug is Orencia. Its given through IV every month. I'm on my 4th month now and i'm still suffering with pain. I thought at this visit she would tell me its not working now all that is left is an injection everday. This girl does not do very well with shots! Luckily that wasn't the case but she did say that alot of people dont get the benfits from orencia til 6 months and are still getiing them a year to 2 years later! That a long time to suffer! So for now Im on prednisone the devil's drug. I refuse to go above 15mg because of the weight gain but its the one drug keeping me from being stuck in a bed all day. So I figure I have 2 months til i feel a big benefit from orencia. It's hard to live this rollercoaster of one day being ok and the next being too weak or sore but i'll do cause like I tell everyone there is no other choice.
Friday, December 28, 2007
Hello world!
My name is LJ. I'm 21 years old and I live in a world ruled by Juvenile Rheumatoid Arthritis. I hate using the saying "ruled by" but I have to admit it's the truth. Ever since I was diagnosed in 1996 I fought against the disease. I fought to be "normal". Now I don't fight so much to be normal as I do to be independent. Being independent is not easy to do with a disease like mine. For those of you that do not know about JRA it is rare and can be very destructive to the body. If the disease don't cause damage the medicine one might take, will over the years.
It has been 12 years now since this ugly disease showed its face. I have overcame deep depression, using a wheelchair for 4 years to get around, fevers higher than 102.5 degrees, 2 or 3 blood transfusions where one I had a terrible reaction to, and manage to graduate high school in the top 10% of my class. It seems like so much and it feels like nothing at all. Today, I have nothing to show for it. I have not been able to work since I was 19 years old, now leaving me to live off of Social Security. How a ill 21 year old college student with bills and credit cards lives off of $459 a month is beyond me. Some how I get through it. A blog on ssi and that bull crap will come later!
The point of this blog is to give me a place to vent but to hopefully help and meet other like me that are suffering with a disease. I would love to meet everyone and anyone! So again HI WORLD!!!
It has been 12 years now since this ugly disease showed its face. I have overcame deep depression, using a wheelchair for 4 years to get around, fevers higher than 102.5 degrees, 2 or 3 blood transfusions where one I had a terrible reaction to, and manage to graduate high school in the top 10% of my class. It seems like so much and it feels like nothing at all. Today, I have nothing to show for it. I have not been able to work since I was 19 years old, now leaving me to live off of Social Security. How a ill 21 year old college student with bills and credit cards lives off of $459 a month is beyond me. Some how I get through it. A blog on ssi and that bull crap will come later!
The point of this blog is to give me a place to vent but to hopefully help and meet other like me that are suffering with a disease. I would love to meet everyone and anyone! So again HI WORLD!!!
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