Note for New Readers: I know this is not Disney related, but when I started this blog, I said it would not be all Disney related. This blog is also to talk about my life and health situations and getting to know who I am. Here is a little bit about me so you can get to know me better outside of the Disney realm.
I realized that I hadn't written one of these in a while. Mainly because my health situation has been pretty steady and relatively boring....aka, just the way I like it! This has changed recently, some for the good and some, well, we really don't know if it's bad or not yet.
The good was a change in the style of injection that I take. I take Enbrel and was on the "SureClick" for a long time. For those who do not know, the SureClick is a kind of injection where you just press a button and hold the tube to your skin and it injects the medication for you. This was working fine, but the SureClick has a preservative in it that, for some reason, causes a larger amount of pain than with the other versions of the medication. I hadn't minded this for a long time, but recently I have been so frustrated with the weekly soreness I would get from the injection that I decided to look into other options. I settled on the prefilled syringe, which is just like a normal syringe for vaccines or shots but comes shipped with the medication already measured out. I tried my first one today and WOW what a difference! No pain or irritation, it was so nice! I am so glad I decided to switch and if there is anyone else out there using the SureClick and having issues with pain, I highly suggest you switch. Some people are worried about actually sticking themselves with a needle, but this one is so painless, its very easy to do and the needles itself is not that big at all.
My other bit of news is about playing yet another game of "What the heck is this?". Odd, pin-point like marks have began spotting the top of my feet and, not knowing what they were, I called my Rheumatologist thinking it was a medication reaction. For those who may be wondering, they do not hurt or itch, I really cannot feel them at all, and when you press on them, they do not go away, which caught my attention. My RA doc looked at them today and said she did not know what they were. So, I am off for a second opinion to my primary. If he doesn't know, we will try to bombard the marks with a short term steroid treatment to get rid of them. And if that doesn't work, it's off to yet another doctor, a dermatologist, to see if they can diagnose it. There is a small possibility this could be the very early stages of something serious, but we are not jumping to conclusions and quite honestly, I'm not even gonna mention it right now because it is irrelevant until we try all of this other stuff. So the end of next week I have an appointment with my primary and hopefully we can get this sorted out then and I will have more good news for ya!
Showing posts with label RA. Show all posts
Showing posts with label RA. Show all posts
Wednesday, April 13, 2011
Saturday, May 8, 2010
Disney and Arthritis
As I was searching around for some pictures of Disney the other day, I came across one that got my attention very quickly. It was labeled "1956- Walt Disney" and it was from arthritis.org. Naturally, I just had to click on it and check it out. The page that came up was called "Milestones for Juvenile Arthritis" and it discussed programs and people who supported the fight to find a cure for Juvenile Arthritis. Sure enough, about half way down the page, was a picture of Walt Disney with a young boy who has JA. See the full article and picture here.
After seeing this, I was curious if there was any way that Disney was involved with the Arthritis Foundation, so I did a Google search to see what I could find. The page I came across first was a page for the 2011 Joints in Motion Training Team. This online training team is helping runners to train for the Walt Disney World Half Marathon and Marathon in January while raising money for the Arthritis Foundation!
When you register for the team, you are given your own interactive pages and a whole community of people to talk to who are running for the same cause. It costs $150 to join the team for the Half Marathon, the Marathon or Goofy Challenge and if you have ran with the the team before, it is only $100 to register again. This joiner's fee includes the training information you receive online, guaranteed event entry, hotel accommodations at a Walt Disney World Resort, Team Apparel, Team Incentives, and your own personalized fund raising site and tools for the fund raising. The Donation goal for the program is $2600, all the money going to help find a cure to Arthritis.
If you are not a runner, you can go to the site just to donate to the cause as well. If you know someone who is running on the team and would like to donate to their goal, just go to the page and search for their name.
If you are interested in registering for the Joints in Motion Training Team, visit their website here.
After seeing this, I was curious if there was any way that Disney was involved with the Arthritis Foundation, so I did a Google search to see what I could find. The page I came across first was a page for the 2011 Joints in Motion Training Team. This online training team is helping runners to train for the Walt Disney World Half Marathon and Marathon in January while raising money for the Arthritis Foundation!
When you register for the team, you are given your own interactive pages and a whole community of people to talk to who are running for the same cause. It costs $150 to join the team for the Half Marathon, the Marathon or Goofy Challenge and if you have ran with the the team before, it is only $100 to register again. This joiner's fee includes the training information you receive online, guaranteed event entry, hotel accommodations at a Walt Disney World Resort, Team Apparel, Team Incentives, and your own personalized fund raising site and tools for the fund raising. The Donation goal for the program is $2600, all the money going to help find a cure to Arthritis.
If you are not a runner, you can go to the site just to donate to the cause as well. If you know someone who is running on the team and would like to donate to their goal, just go to the page and search for their name.
If you are interested in registering for the Joints in Motion Training Team, visit their website here.
Wednesday, April 14, 2010
Health Update
Just thought I would give a brief health update since I had a Rheumatologist appointment today.
According to my doc, I am doing very well, the Enbrel is working well, she has filled a perscription for a year and everything looks like its going good! I am so glad! She even told me a few exercises that I can do without causing too much impact, so I think I am set to go for the summer! The only bad thing I found out today was that eventually I may develop osteoarthritis, but that will be a while away and as long as I take care of myself like I have been doing, I will be fine for a long time!
So glad things are finally looking good on the health front! :)
According to my doc, I am doing very well, the Enbrel is working well, she has filled a perscription for a year and everything looks like its going good! I am so glad! She even told me a few exercises that I can do without causing too much impact, so I think I am set to go for the summer! The only bad thing I found out today was that eventually I may develop osteoarthritis, but that will be a while away and as long as I take care of myself like I have been doing, I will be fine for a long time!
So glad things are finally looking good on the health front! :)
Wednesday, October 14, 2009
New Doctor-Old Medications
Tuesday the 13th, I went and met my new rheumatologist. She is at Christiana Hospital in Delaware. I admit, I was upset not to be going to the children's hospital anymore, but one must move on when they hit the age of 21.
What made me miss the children's hospital the most was the change in exam rooms. In the old hospital, there were butterflies painted by some of the children on the ceiling tiles and colorful posters, including ones with Mickey Mouse, in the rooms. At this new hospital, there was not much color and on the walls of the rooms, there were posters describing the disabling process that RA takes on the body, including this one terrible poster that showed the joint damage that happens to hands over time and I could not look at it because seeing what may happen to me someday upsets me and is something I do not want to think about right now. I just want to focus on what I am doing now and keeping myself the way I am right now, dwelling on the future and what may happen does nothing for me.
The doctor herself was very nice and I am quite excited to be going to see her! She explained everything well and did not cause any pain during my exam at all! She is definitely a good doctor to go to and am looking forward to my follow-up in 2 months.
Why do I have a follow-up in 2 months? First is because my doctor is pregnant and she wants to see me one more time before she takes her maternity leave. The second is because we may have to decide on a new medication to start me on. The short of it is that I am having problems getting the Enbrel because of the insurance plan that I have and I may not be able to stay on it. This really stinks because this medication was making me feel better than I have in years. Right now I am not on anything, this is the first week of being on nothing and we are gonna see how bad I am in the next couple weeks. Depending on how fast I decline will decide what the doctor prescribes me just to keep me going until the appointment. After that, we will decide what route to take next. If everything works out, I will be on the Enbrel once again and everything will be fine. If this does not work out, we are looking at 3 options. 1-Another type of shot just like Enbrel (Humira, Symphoni...) 2- A 3 hour infusion every other month (the medication begins with an R, but i keep forgetting the name of it) and 3- Back a step to the Methotrexates! My goal: Avoid the Methotrexates at all cost! It all depends on what happens in the next few months, so we shall see.
How am I feeling right now? So far, not much pain, I have just been feeling a bit run down, but this could also be because of school. The next couple days are going to be pretty cold here, so that will be a test on my body for sure, but we shall see what happens. I will keep this blog posted with what happens as this process continues.
What made me miss the children's hospital the most was the change in exam rooms. In the old hospital, there were butterflies painted by some of the children on the ceiling tiles and colorful posters, including ones with Mickey Mouse, in the rooms. At this new hospital, there was not much color and on the walls of the rooms, there were posters describing the disabling process that RA takes on the body, including this one terrible poster that showed the joint damage that happens to hands over time and I could not look at it because seeing what may happen to me someday upsets me and is something I do not want to think about right now. I just want to focus on what I am doing now and keeping myself the way I am right now, dwelling on the future and what may happen does nothing for me.
The doctor herself was very nice and I am quite excited to be going to see her! She explained everything well and did not cause any pain during my exam at all! She is definitely a good doctor to go to and am looking forward to my follow-up in 2 months.
Why do I have a follow-up in 2 months? First is because my doctor is pregnant and she wants to see me one more time before she takes her maternity leave. The second is because we may have to decide on a new medication to start me on. The short of it is that I am having problems getting the Enbrel because of the insurance plan that I have and I may not be able to stay on it. This really stinks because this medication was making me feel better than I have in years. Right now I am not on anything, this is the first week of being on nothing and we are gonna see how bad I am in the next couple weeks. Depending on how fast I decline will decide what the doctor prescribes me just to keep me going until the appointment. After that, we will decide what route to take next. If everything works out, I will be on the Enbrel once again and everything will be fine. If this does not work out, we are looking at 3 options. 1-Another type of shot just like Enbrel (Humira, Symphoni...) 2- A 3 hour infusion every other month (the medication begins with an R, but i keep forgetting the name of it) and 3- Back a step to the Methotrexates! My goal: Avoid the Methotrexates at all cost! It all depends on what happens in the next few months, so we shall see.
How am I feeling right now? So far, not much pain, I have just been feeling a bit run down, but this could also be because of school. The next couple days are going to be pretty cold here, so that will be a test on my body for sure, but we shall see what happens. I will keep this blog posted with what happens as this process continues.
Sunday, October 4, 2009
Hurray for lack of medications!
I just wanted to write a quick little entry for everyone who has been following my health issues over the last few months. As of this past Thursday, the 1st of October, I am no longer on any pills! No pills to take at breakfast time! This is the first time in over 5 years, since I was diagnosed, that I have not had to take a pill. I just have the weekly injections now, which have been going pretty well! Finally, all has seemed to settle in my health world, and I am so glad for it!!
Thursday, August 27, 2009
Positive signs in my Health Dept.
After months of doctors and medication switches and tests, my Rheumatoid arthritis seems to finally becoming stable. I went to my last visit with the child Rheumatologist yesterday and after him and the resident nurse gave me a once over, they seemed to be in agreement that the Enbrel is working wonders and that my body is acting well to it! They also think that I no longer need the steroids, so starting this morning I am slowly weening myself off of them! I will be completely pill free in 5 weeks! I am really excited about this because this will be the first time I have not had to take pills in over 5 years!
On the dizzy-spell homefront, I have made an appointment with the Ear, Nose and Throat doctor that the Neurologist told me to see for next friday. Hopefully this doctor will be able to find out what is with the vertigo like feelings. More on that problem next week.
On the dizzy-spell homefront, I have made an appointment with the Ear, Nose and Throat doctor that the Neurologist told me to see for next friday. Hopefully this doctor will be able to find out what is with the vertigo like feelings. More on that problem next week.
Monday, July 20, 2009
The remedy??
Just an update on my health situation for everyone:
I was approved for the Enbrel by my insurance and received it on Thursday by FedEx! It had to be shipped cold. I took my first injection yesterday morning. While it was quite painful, the injection part only lasted about 15 seconds and the pain afterwords lasted but a few minutes. I haven't had any side effects so far either! Hopefully this will be the beginning of the end when it comes to oral medications! I am still on the Prednisone just as a precautionary back up. When I go back to the doctor at the end of August, he will begin to ween me off of it, so I will be strictly on the Enbrel and we can watch its full effects with the new doctor. It looks like steps are finally going in the right direction!
As for the dizzy spells, nothing about them yet. I don't go to the Neurologist until the 11th of August, so we will have to wait and see what happens. I am still having dizzy spells almost daily, but I am learning to cope with them.
I was approved for the Enbrel by my insurance and received it on Thursday by FedEx! It had to be shipped cold. I took my first injection yesterday morning. While it was quite painful, the injection part only lasted about 15 seconds and the pain afterwords lasted but a few minutes. I haven't had any side effects so far either! Hopefully this will be the beginning of the end when it comes to oral medications! I am still on the Prednisone just as a precautionary back up. When I go back to the doctor at the end of August, he will begin to ween me off of it, so I will be strictly on the Enbrel and we can watch its full effects with the new doctor. It looks like steps are finally going in the right direction!
As for the dizzy spells, nothing about them yet. I don't go to the Neurologist until the 11th of August, so we will have to wait and see what happens. I am still having dizzy spells almost daily, but I am learning to cope with them.
Wednesday, July 8, 2009
I am starting to not like words that end in -ologist....
Today, my journey to the -ologists takes me to the Rheumatologist (Rheumatoid Arthritis doctor). When we last left this doctor, he had prescribed me with some steroids to take and told me to come back in a month to see how we were doing. Ive been taking the steriods and they have been doing an ok job; I haven't been in daily pain but I have had strange, isolated incidents (pain when writing, strange stiffness in the left arm).
Oh, and quick side note, dislike this medication for two reasons- 1. has a god awful taste! and I take 3 of them a day! and 2. The main side effect is minor puffyness in the cheeks, so I do not look like a stinking chipmunk, but I have little baby-fat cheeks that make me look 5 years younger than I already did, so instead of being a 20 year old who looks 17, I am now a 20 year old who looks about 12....dislike!!!!
Ok, moving on...
The doc takes a look at all my joints, does the poking, prodding and bending (this is a very painful procedure at times, he basically is taking all my joints and bending them to see the level of resistance) He finds some random fluids in my knees and in a couple fingers and some resistance in my left wrist. He then tells me that, because I am transitioning in 2 months (2 months from tomorrow I turn 21, so I have to go to the adult Rheumatologist- I am at a children's hospital for my rheumatoid right now), he wants to try to get my disease in as much control as he can before shipping me off to the new guy...or girl I should say. So, he decides to give me Enbrel.
You may or may not have seen commercials for this drug on the TV, this along with Humira are two of the more popular commercial drugs for RA. It is an injection that I have to give to myself once a week, typically in the leg. There are really no side effects with this drug and it is practically guaranteed to work!
The bad side comes in when you find out that the cost of the drug is about $16,000 a year! Its pretty much a second college tuition. I thankfully have insurance, but because of the cost of the medication and I did not expend every single option before I am trying this one, getting them to pay for this is a fight. So now my doctors and I are going to fight with the Insurance for the next week until they decide to give me the drugs that I need. The nurse gave me this really cool travel bag to keep my bio-hazard box in for when I travel *coughDisneycough* and it has some good information for me!
I also left the doctor with a script to get an MRI done for my jaw. Its not opening as far as it should and he wants to make sure that the TMJ I have has not gotten any worse.
So, thats the (somewhat) short of my doctors appointment. Feel free to leave me any comments or questions you have.
Oh, and quick side note, dislike this medication for two reasons- 1. has a god awful taste! and I take 3 of them a day! and 2. The main side effect is minor puffyness in the cheeks, so I do not look like a stinking chipmunk, but I have little baby-fat cheeks that make me look 5 years younger than I already did, so instead of being a 20 year old who looks 17, I am now a 20 year old who looks about 12....dislike!!!!
Ok, moving on...
The doc takes a look at all my joints, does the poking, prodding and bending (this is a very painful procedure at times, he basically is taking all my joints and bending them to see the level of resistance) He finds some random fluids in my knees and in a couple fingers and some resistance in my left wrist. He then tells me that, because I am transitioning in 2 months (2 months from tomorrow I turn 21, so I have to go to the adult Rheumatologist- I am at a children's hospital for my rheumatoid right now), he wants to try to get my disease in as much control as he can before shipping me off to the new guy...or girl I should say. So, he decides to give me Enbrel.
You may or may not have seen commercials for this drug on the TV, this along with Humira are two of the more popular commercial drugs for RA. It is an injection that I have to give to myself once a week, typically in the leg. There are really no side effects with this drug and it is practically guaranteed to work!
The bad side comes in when you find out that the cost of the drug is about $16,000 a year! Its pretty much a second college tuition. I thankfully have insurance, but because of the cost of the medication and I did not expend every single option before I am trying this one, getting them to pay for this is a fight. So now my doctors and I are going to fight with the Insurance for the next week until they decide to give me the drugs that I need. The nurse gave me this really cool travel bag to keep my bio-hazard box in for when I travel *coughDisneycough* and it has some good information for me!
I also left the doctor with a script to get an MRI done for my jaw. Its not opening as far as it should and he wants to make sure that the TMJ I have has not gotten any worse.
So, thats the (somewhat) short of my doctors appointment. Feel free to leave me any comments or questions you have.
Thursday, July 2, 2009
My Health
So, I've been complaining a lot about doctors and feeling bleh lately and I figured I would explain what its fully all about.
Freshman year of high school (2003-2004), I had some weird sick spells; from poison ivy on my ankle making it swell up to a melon size, to having pain in my wrist every time I would play my flute. My friend had been diagnosed with Carpal Tunnel and I thought I would get that checked out, so I went to the doctor after school was out.
That summer was filled with blood tests that told me that I had Lyme Disease, which I had to go on medication for immediately. After a brutal summer which included my second and worst trip to Disney World thanks to the insane medication I was on and a lot of blood work and false diagnoses, I went back to school in the fall with the final diagnosis of Rheumatoid Arthritis.
What we later figured out was that the "poison ivy" that I had in the fall was not really poison ivy, but a tick bite that did not form in the usual bullseye mark, so I never knew it was that. So I had Lyme Disease festering in my body completely unchecked for almost 10 months and while it was wreaking havoc, it brought out my genetic disposition for RA about 50 years earlier than I would have gotten it if I did not get bitten.
I went to a rheumatologist and was given medications to take that worked well with only minor dosage increases for almost two years. It took some getting used to, but I was doing everything I could before with only minor pains.
Problems came back August right before senior year. I had maxed out on the one medication and was given a new one, one with sulfa in it. I was on it for three weeks and was feeling great! The fourth week came and I got really sick. Turns out that I am allergic to sulfa and I was on the brink of having total liver failure. We stopped the meds and went on the old medication so my body could be monitored. It took 5 months for the swelling in my liver to go down completely. After I was better, I started new meds, avoiding sulfa and trying to find something that would work well.
This is what brings us to today. For the last two years, I have jumped from one medication to another. Some have not worked for my arthritis and others just ripped up my stomach so much that I didn't care if the helped the RA cuz I was in too much pain otherwise. I have been on every single NSAID (Non-Steroidal Anti-Inflammatory Drug) that I can go on and none of them work for me and my difficult body. My doctor knows what he wants to do next, he wants to start me on methotrexates. Only problem is that I am switching doctors in September when I turn 21. I am at a children's Rheumatologist right now, so I have to switch in September. The methotrexates are a chemotherapy that my doctor like to carefully monitor because of the extreme affects it can have on the body and, since I will not be with him much longer, he does not have the time to monitor as he will like. So, I have to wait until Oct. 13th to see my new doctor and get the medicine that I need. Right now I am living on a steroid to kind of bide my time until I can go on the medication that I am supposed to go on.
That is my basic health spiel from the last 5 years. Sorry for the length but I figured you guys should have an idea whats going on in my crazy life.
Freshman year of high school (2003-2004), I had some weird sick spells; from poison ivy on my ankle making it swell up to a melon size, to having pain in my wrist every time I would play my flute. My friend had been diagnosed with Carpal Tunnel and I thought I would get that checked out, so I went to the doctor after school was out.
That summer was filled with blood tests that told me that I had Lyme Disease, which I had to go on medication for immediately. After a brutal summer which included my second and worst trip to Disney World thanks to the insane medication I was on and a lot of blood work and false diagnoses, I went back to school in the fall with the final diagnosis of Rheumatoid Arthritis.
What we later figured out was that the "poison ivy" that I had in the fall was not really poison ivy, but a tick bite that did not form in the usual bullseye mark, so I never knew it was that. So I had Lyme Disease festering in my body completely unchecked for almost 10 months and while it was wreaking havoc, it brought out my genetic disposition for RA about 50 years earlier than I would have gotten it if I did not get bitten.
I went to a rheumatologist and was given medications to take that worked well with only minor dosage increases for almost two years. It took some getting used to, but I was doing everything I could before with only minor pains.
Problems came back August right before senior year. I had maxed out on the one medication and was given a new one, one with sulfa in it. I was on it for three weeks and was feeling great! The fourth week came and I got really sick. Turns out that I am allergic to sulfa and I was on the brink of having total liver failure. We stopped the meds and went on the old medication so my body could be monitored. It took 5 months for the swelling in my liver to go down completely. After I was better, I started new meds, avoiding sulfa and trying to find something that would work well.
This is what brings us to today. For the last two years, I have jumped from one medication to another. Some have not worked for my arthritis and others just ripped up my stomach so much that I didn't care if the helped the RA cuz I was in too much pain otherwise. I have been on every single NSAID (Non-Steroidal Anti-Inflammatory Drug) that I can go on and none of them work for me and my difficult body. My doctor knows what he wants to do next, he wants to start me on methotrexates. Only problem is that I am switching doctors in September when I turn 21. I am at a children's Rheumatologist right now, so I have to switch in September. The methotrexates are a chemotherapy that my doctor like to carefully monitor because of the extreme affects it can have on the body and, since I will not be with him much longer, he does not have the time to monitor as he will like. So, I have to wait until Oct. 13th to see my new doctor and get the medicine that I need. Right now I am living on a steroid to kind of bide my time until I can go on the medication that I am supposed to go on.
That is my basic health spiel from the last 5 years. Sorry for the length but I figured you guys should have an idea whats going on in my crazy life.
Tuesday, June 30, 2009
Honors Class Topic Seaching...
Ok, so I need some help from you guys and gals. I am in the Honors Program at my university, which requires me to write a research paper on any topic of my choosing. Right now, I have 6 topics that I am looking at, which are listed below. What I need from you awesome people is to tell me which one of these topics you would be most interested in hearing a lecture about or learning about (The goal of the program is to get lecture and publishing experience). If you guys could tell me which of these topics you find interesting, I would really appreiciate it!
1- Wild Children (view www.feralchildren.com for an idea of what I mean)
2- Sevants Syndrome
3- Rheumatoid Arthritis/JRA
4- George Washington's Culper Gang and the development of the Spy Systems of Today
5- Helen Keller and the development of deaf and blind language
6- Francis Marion and the similarites and differences between history and "The Patriot"(Would probably include a brief analysis of the movie "The Patriot" along with a plot summary)
1- Wild Children (view www.feralchildren.com for an idea of what I mean)
2- Sevants Syndrome
3- Rheumatoid Arthritis/JRA
4- George Washington's Culper Gang and the development of the Spy Systems of Today
5- Helen Keller and the development of deaf and blind language
6- Francis Marion and the similarites and differences between history and "The Patriot"(Would probably include a brief analysis of the movie "The Patriot" along with a plot summary)
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