HALLELUJAH!

Had my summer rheumy appointment last week. I'm doing so well that I can stop all of my pills and only do the weekly injections!

This means NO METHOTREXATE. (Although for the past 2 months i've been taking it every 2 weeks, it makes me too tired)

I am so beyond happy.



Although we did find a rib bone near my sternum that is very enlarged. He took an x-ray and had them sent to a radiologist to be read. I'm not too concerned, but I will let you all know what he finds!

Nice to hear.

"Great that I found this! Someone I can finally relate to.. I'm 16 and was diagnosed with ankylosing spondylitis last year."


I love hearing from people who have found my blog. It's nice to know that even though we have different diagnosis, they can relate to me. I guess it's also a reminder that I'm not the only one suffering so young. 

7 years too long.

I'm not sure if I posted this on here or not, but I was a long time vegetarian. I had decided to give up meat at age 11 and was keeping strong! That is until about 2 months ago. I have not written about this, but all year I have felt a sort of insatiable hunger while in Flagstaff. I was not sure if this was due to the climate change, and my bodies need to burn more calories in order to stay warm, or if I was simply more active. However, eating more and bigger portions satisfied this feeling at first, but soon was not enough. I began craving high protein foods and carbohydrates such as peanut butter and breads, but was still not relieved. Eventually I actually began craving meat. And not just the occasional desire for a taste it, but actual CRAVINGS. It was then that I decided that this was my bodies way of telling me that I'm not giving it what it wants. My nutrition was not exactly at it's peak, and the fact that I clearly wasn't giving my body what it needed were my ultimate deciding factors. I tried to substitute other forms of proteins and the missing fats into my diet, but the results were not enough.

On a random night in April, we went to McDonalds, and I caved. Yes, I know it's McDonalds and possibly the worst fast food health wise and abuse wise, but I could not stand it any longer. The chicken nuggets would be easy to digest considering they are hardly chicken and I just had to have them.

I cannot even being to describe how much it has positively affected my health. I feel 100x better than I used to, and I never even considered my nutrition to be a factor. My hair and skins condition have greatly increased, and my strength has as well. I now have a much higher endurance and stamina levels, and my insatiable hunger has vanished.

It does however not exactly make me happy morally to be eating animals again, but I have found that I cannot go back to my vegetarian lifestyle due to the health benefits.

Mono.

It has been a while since i've updated this, but I have been quite busy lately!

My freshman year went very well, but I do have one more story that many college students may relate to. Mononucleosis.

At the end of April I woke up one morning with extremely swollen glands in my neck. Worried from the sudden onset, I watched them for the next few days. They did eventually go down, but I began to run a slight fever and was soon overcome with extreme exhaustion. Yep, it was mono. And if anyone has ever had it, you know how tired it can make you feel. This, along with the normal fatigue from RA and the side effects of the methotrexate made it horrible. I would go to bed, wake up for class, come back from class, and go right back to sleep. (Although I normally did this for a power nap after class ). The difference however, was that I would wake up around 4 still sleepy, and would soon feel ready for bed.

After a few days of this, I decided that I needed to go to the doctor again. I was pretty worried that I would catch another illness, considering the medications I am prescribed are immunosuppressants. There we contacted my doctor, and I was ordered to stop all medications for at least two weeks. Having  mono and decreasing my bodies natural defenses would only make the illness last longer.

And dear lord, I really did begin to notice how much I need a treatment. My joints began to stiffen just a few days after stopping, and it made me realize how thankful I am for my treatments and doctor. Without them, I would still be in the pain that I was in highschool. Unable to participate in activities and unhappy with life.

Two weeks went by, and sure enough I was was feeling much better. I was given the okay to start my pills and injections again, and quickly was back to my normal routine :) So just a heads up for anyone who might be questioning if you have an auto-immune disease with mono, it is actually bearable haha. Luckily mine was not a bad case, but it is really important to stop medications. I feel that it really did help, and i'm glad I went to the doctor to find out!

Arthritis Survey

If you could please participate in this survey that would be amazing!!

They are developing a product to assist people with joint problems, and would really appreciate it if any of you could give your input.

http://www.surveybuilder.com/s/JqbPwEErgAA

Campus Health Part II

I just realized that I forgot to mention this part of my campus health experience. After running out of my Enbrel samples, we had to figure out a way to get them here. Considering they had to be refrigerated, it was quite a challenge. They were shipped to my home address in Phoenix due to my parents being the health insurance owners. For the first 2 months, my dad actually had to drive up and bring me the shots. This was not only an inconvenience to him, but to me as well, seeing that I was working often. We shortly decided that this needed to change, and NAU's campus health really did help us in this process. My mom called the office, and they actually figured out a way to have the medication shipped to them. They had to create a whole new process to do so, for they had never had a situation like this before. It was quite funny actually, I went in to pick up the medication, and they had me go into a room like a regular visit. The doctors there were all pretty curious to see what the injections look like, and to actually see me. When I went into the room, there were 2 nurses in there having me fill out the receiving paperwork, and about 3 doctors who somehow had found excuses to need to be in that room. They all had no reason to be there, but like I said, it was humorous to see them standing around, or walking in to just watch. Anyways, after this initial visit, I only have to go back once a month to pick up the medication. They always call me to tell me when the expected arrival date is, and when to come and get it. I just walk in, we unpack the box to make sure it is all there, I sign the release form, and all is well. I really have had a good experience having campus health work with me, and I am really grateful for it. They often send me emails and talk to me to ask how i'm doing, and it really does help to just explain your situation to them, for they can really do something about it.

Gladiator Run

As I mentioned before, I decided to run a 5k race while I still can. It was the Phoenix Gladiator Rock'N Run autism fundraiser and I was actually pretty nervous to see how my joints would react.

The race included a mountain run, and 17 obstacles including a mud craw, fire put jump, and rope wall that we had to climb. It was a strain to be able to do some of the events, but overall not bad! I was surprised to see how well my body handled it, and had very little swelling and pain the next day. It has really encouraged me to start being more active, and I'm hopefully going to be signing up for a half marathon soon.

Here are some pictures from the race. We were team "Tutu's and Tata's".

Spring Break

So excited to be home! My and my mom are planning T-shirt designs that we will hopefully be making soon. I can't wait to get them out to start fundraising for OA. I'll post them on here as soon as they are finished!


Also, since being home, I have noticed that weather actually does seem to have an effect on my joints. The heat seems to really be helping them, which is great considering I will be moving back here next year!

 My kitty!

Camel ride at the Renaissance Festival! 

Gladiator Rock'n Run!

I must be insane for singing up for this, but me and a few friends have started a team for the Phoenix Gladiator Rock'n Run! It's a 5k race with 17 obstacles, including a mud crawl, freezing water swim, and a rope course. I know my joints will probably hate me the next day, but I might as well participate in things like this while I can! Our theme is Tutu's and Tat's and I will post pictures after the event! It is on March 17th, and here is the link for anyone who is interested http://www.gladiatorrocknrun.com/

Interview

I was recently asked for an interterview about living with ra, to assist a university in Malaysia with a product development. So excited! Just thought i'd let you all know :)


Also, I want to create ra shirts with the profits going towards the national arthritis foundation. Would anyone be interested in purchasing one if I did?

My Mom Is Awesome!

She found an arthritis walk in Phoenix and has become a team captain. If anyone is interested in donating or walking please check out her team link!

http://pazarthritiswalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=492030&supid=352665300

Cool Things!!

I recieved an email from a Cornell student asking me if I would help her with a project. Her aunt had RA, and she is designing a piece of furniture for people living with RA and wants to ask me questions. So cool!


I'm glad people are finding this blog.

Enbrel

I started Enbrel about a month ago, and recently took pictures of the process. My Rheumatologist told me that the methotrexate and plaquenil were not enough anymore. 

I was incredibly hesitant to start the shots, considering they are weekly injects and I completely DESPISE shots. I originally wanted to do the monthly IV drip, but somehow my rheumy and parents talked me into doing the weekly injection. I chose the pen version, and the weekly dose will be better to provide constant medication.

Knowing that I was living away from home, they even sent me a brand new bright red hazardous waste bin that I get to keep in my dorm. YAY.............. try explaining that to your ra or friends.

The Shot (The Pen) 


First of all, I want to note that before each injection, I ice my leg for about 3 minutes, clean it with an alchol pad, and then proceed. I find that the ice helps to numb the skin, making it hurt less. My dad reccomended I do this, considering he takes the weekly humira for psoriasis and it has helped him.

• The directions tell you to first clean your hands, and pull the skin apart with your index finger and thumb to make area tight. If you don't do this (which I have done) the needle tends to go through more skin, causing it to bleed more afterwards. 

• When you place the pen onto the area, you have to push it down first, so the rubber tip sinks down a bit. It almost seems like a spring, you push it down until you can't and are ready to basically shoot your leg. 

Yes, I took pictures of the one time I forgot to pinch the skin. 

Also, please excuse my messy room. Although I think it really shows the college life haha.

• This was me right before I pushed the button. You can see that I am pushing it down into my skin (the spring like thing I mentioned)The cap is a dark blue cap, and it you have to push it all the way down in order for it to work. 

• Once you click it, there is a lound snap noise, and the needle in inserted.

• It stays in for about 30 seconds, until you hear another click, and it is safe to pick the pen up. When it is in however, you want to keep your hand as still as possible, because the needle is in fact about 2 inches in your flesh. And moving your hand would not be pleasent. When the medication is going in, it slowly inserts, and there is a slight pain or burning, but it's not bad at all. 

Afterwards

The redness on my leg is from the cold ice pack!

• It will start like a small dot of blood like this, but be cautioned, it spreads very quickly. I'm not sure if this is because my blood is thin from other medications, or from the enbrel. I usually wipe it off with a tissue or gauze, and place a bandaid on it. (However, often times I have to change it due to the amount of blood) 

• You might want to note the brusie from last week. That's one downside of the weekly shots. I always have small unfortunate looking bruises on my leg.

My Review

I really didn't notice a difference in my joints at first, but over time I have realized that I haven't had any swelling in the past month. I'm not sure if this is because I have gone back to school or not. However, I am working at the same job I was over break, so this should not be the case. 

What I DID notice right away was my energy level. While on methotrexate, my energy is always shot. I never have energy to do anything, and with a daily 8:00 am class, I thought this would be a problem. However, since being on enbrel, I have noticed a tremendous increase in my energy. I am more active and more awake for nearly everything, and I absolutely love it!!

Overall, I'm obviously going to stick with it to see what happens, but so far so good!

Update

According to my last blood test from december, the RA factor in my blood showed up negative. The RA factor is never negative after it tests positive. My doctor is unsure what this means....

The Cortisone Injection

My story.

About two weeks ago, I went to my rheumy for a checkup. While there, he noticed that my right knee was pretty inflamed, and suggested that I have a cortisone operation. Trusting his opinion, I readily agreed.

And oh. my. god.

They first cleaned off my knee with a large amount of iodine, prepared the needle, and set everything up. He then had his assistant spray a freezing stream of water onto the area right as he punctured the skin. 

After this point, they usually insert the 2 inch needle completely into your joint, and remove any fluid. After your knee is fully drained, they inject the medication. However, here's what happened in my case: 

You see how there is very little room between the area the needle needs to go, and the bone? Yeah. My  rheumy (who I love to death) had marked my knee a bit too low, and when he went in, he hit the lower bone. It was probably the most painful thing I have ever felt. After realizing that he had scraped along it, he pulled out a bit of fluid, and quickly took it out. He then injected my knee with a numbing medication, and did the procedure again, but slightly higher. After successfully getting the medication in, my knee was like a balloon. It was swollen with the medication, and throbbed whenever I bet it. It was like this for the next day and a half, and even though this process was not exactly a cup of tea, it did help. It was almost incredible how much it improved, it was almost as if I didn't even have any joint damage at all! If he ever suggests one of these again, I will definitely be getting it done, but with the numbing medication first this time. 

"In my 22 years of being a doctor here, we've never had a case of RA"

Dealing With Campus Health Services

The Nau campus health and fitness center

The Physician: 

After moving away right after starting mtx, it was only natrual that my doctor asked me to have monthly blood tests sent to him for review. After booking an appointment for a campus doctor, she stated that she could not order the labs, because she was not my specialist. This general physician wanted to know what I expected her to do, and told me that she did not know much about the disease. And although I completely understand this, it was a bit frustrating when she basically said that she couldn't do anything. She had been working with the center for 22 years and had never seen an ra patient. Awesome. 

However, after explaining my situation we were able to set up a way to get my lab tests! She was awesome once I explained that I did not need her to treat me, only send my tests. If anyone going into college is in a similar situation, be sure to really explain that all you need done are tests! Not many people suffer from ra in college and they aren't exactly sure what to do with such a case. (My physician had to bend a few rules to get the tests done on campus).

The Dietician and Anti-Inflammatory Diet:

I don't know if I have mentioned this before, but I am also a vegetarian (about 7 years) and recently went to the dietician to discuss a vegan option. Me and one of my roomates decided to do a vegan challenge, and I loved it! It was then that I first learned about the anti-inflammatory diet. She provided me with all kinds of information, and I am pretty excited to start it. I was initially going to start over break, considering I met with her at the end of the semester, but my moms delicious holiday cooking made it impossible. We also decided to talk to my rheumy about it first.

The Anti-Inflammatory Food Pyramid. Wine has it's own catagory, thank god! (I know I'm a freshman and underage, but I love a good glass of white wine... )

My Rhuemy's opinion:

At my last visit, we brought up the idea of starting the diet. He told us that he thought it was definitely a good idea to start eating healthier, but that he has not had a patient try it yet. (As he is a juvenile doctor, but still continues to see me until I go into remission). He gave us the okay to start it, and we are all curious to see how it goes! 

I did not know this!

I recently recieved a comment on My Story, and I thought I would share it! I had no idea that this was true, and it is something that I definitely think is important to know about. I will be looking more into acticles about the topic, and I will share my findings on here.


"Hi lauren, I am a middle aged woman mother and grand mother and live in Canada, I was diagnosed with RA at about age 3. I have done extreemly well throughout my life until this last June when I suddenly dropped dead with cardiac arrest. I had no idea as I am sure most people dont know that RA patients have 50% chance of sudden cardiac death due to the disease. I had no idea RA affected your heart and all other arteries. I wanted to tell you and your readers this in order to help keep an eye on your heart throughout your lifetime. I have always kept active, extrememly active despite my arthritis, I have RA bad in all my finger joints, ankles, neck, wrist, feet. I refused to let the disease run my life and never gave in until it stopped my heart unfortunatley I couldn't fight that one.I wish you all the luck and hope for a bright and happy future although you have been delt this disease.Ive had RA for 46 years now,you can live a good life I think you just learn to work around it and dont let the sickness stop you from living your dreams."


Also, I just want to say thank you for everyone who has visited and read my blog. I love the fact that people can relate and are willing to talk about it. If any of my readers have anything they wish to contribute, please let me know! Your comments and inspiring words mean so much to me. 

College!

While reviewing my blog, I realized that I am missing a very important part 
of my concept, College Life!

Flagstaff, Arizona

Background:

I am currently a freshman studying Business Economics at Northern Arizona University in the tiny town of Flagstaff, AZ! It is about 150 miles away from my family in Phoenix, AZ, and it has definitely been quite a change. If you know anything about Arizona, you automatically think of 100 degree heat in the desert (aka Phoenix weather). Flagstaff however, is quite the opposite. Sure, it gets hot, but it has been pretty chilly for the 5 months that I have lived here. It has snowed quite a bit, and according to USATODAY, it is the 5th snowiest city in the United States!!

My walk to class in the mornings

Moving soon after starting MTX has also been an interesting part of my journey. I started the medication a few weeks before coming up here, and had to quickly adjust! I was a little nervous at all the walking I would have to do on campus, and my excercise class, but it is all going very well.

Sorry for the mess! We have three people living in a two person dorm. The university overbooked the housing... but I'd have to say, I have two great roomates and it is actually a lot of fun... besides the fact that we have to share closets! 

Living in a dorm was also one thing that I was a bit afraid of. Before starting methotrexate, it took a great deal of energy to even get up in the mornings, and I suppose I was afraid that that's how it would be in college. My morning stiffness was aweful. I didn't want to be the roomate who always slept all the time and had constant health problems. (Although I did tend to sleep all the time first semester due to late night studying!). And although it has been good so far, there are definitely times where my ra flares up pretty badly. During these, I keep my knee brace ready, and have the constant support of my family and roomates. They are aware of my difficulties and are always there to help! It is a challenge, but it is one worth fighting for. 

I'll add more soon, tomorrow is the first day of our second semester.

So you've been put on methotrexate, eh?

After my disease continued to worsen while on both hydroxychloroquine and naproxen, my rheumy decided to put me on methotrexate. I am currently taking 6 pills once a week.

Methotrexate is an antimetabolite commonly used for the treatment of breast, skin, head, and neck cancer. It is a form of chemotherapy that stops the growth of cancer cells, skin cells, and decreases the immune system. By decreasing this activity, it helps to slow the progress of ra by delaying joint destruction. Usually used at a lower dose for ra, it is considered a DMARD ( an immunosupressive drug) and a SAARD (slow acting antirheumatic drug).

My reaction: When I was first put on methotrexate, I found no problems with it. I began taking it over summer where I lived at home, worked a part time job, and had much time for relaxation. However, after moving away to live in the dorms in a city about 200 miles away, I have definitely noticed a change. With a full class schedule, a now part time job, and campus activities, taking methotrexate is dreaded, but I know that it helps.

The Cons:  SIDE EFFECTS. When I take this drug, it really wipes me of energy, leaving me exhausted for class the following day. Along with this, I am always extremely naseus (sometimes to the point where I get sick). However, since I have started taking the folic acid, these side effects have drastically decreased. I am still very fatigued the next day, but my nausea is definitely decreasing. If you are put on methotrexate, I strongly suggest that you take folic acid, and take the medication on a weekend night, leaving yourself plenty of time to rest the next day. 

The Pros: My ra has gotten tremendously better. About a year ago, I could hardly get out of bed, and was often unable to participate in sports. Since I have been on methotrexate, I can now easily do tasks that were difficult for me then! (however kneeling and running are still out of the question :( . I am able to go to the gym and exercise on a daily basis, and I recently just finished a kickboxing class in which I had NO pain! Methotrexate definitely does help the joints, but the side effects kill. 

Overall, try it! With the Folic Acid of course.

I am now able to participate in many activities that I definitely couldn't without it. 

The Drugs.

Or my happy pills. Here's my personal opinion and experience with each:

1.)  Hydroxychloroquine (more commonly known as Plaquenil). This is the pill that I have been on the longest, having started iti approximately right after being diagnosed (2009). This is also the pill that I would say has helped me the least. Initially, I was to take two of these a day, along with Naproxen, but the later has been removed. It caused me to bruise very easily and greatly upset my stomach.  Which I have unfortunately found is a common side effect of any ra medication. So if you are just starting, I hate to break it to you, but your stomach will be pretty raw. Anyways, my ra got better for a while (with bad flares here and there), but I came out of remission this past summer.

2.) Allegra. I take an allegra pill for allergies daily, and I find that it helps to clear my skin of any rashes ra can cause.

3.) Folic Acid. This pill is often prescribed along with methotrexate. When taking methotrexate, your body can create a folic acid deficiency which can lead to stomach ulcers, nausea, hair loss, and liver and blood complications. I have been on methotrexate for about 7 months and actually just recently started taking 1 folic acid pill daily. I have already noticed a pretty significant decrease in my nausea (Thank god!).

4.) Biotin. I take one biotin pill daily to prevent the hair loss side effect of being on an anti-metabolite.

5.) Vitamin D. My dietitian and my mother are both avid supporters of taking vitamin D. People who are undergoing treatments for RA tend to have a vitamid D deficiency, and I take it daily to prevent any further bone damage.


I am also taking the oral methotrexate pills, and enbrel injections. 

If you don't know what RA does over time, here's a picture. 

My Story

They say you never really understand something until it happens to you. . . In my case, this is fully accurate.

Before 2009, the only knowledge I had of Rheumatoid Arthritis was from the commercials promoting new treatments. I had always disregarded the disease as simply something I would never get. My naive mind saw it as 'plain old arthritis', an issue that only 'old' people dealt with as they grew older. Needless  to say, I was wrong.

Step1: The Beginning 

I first began to notice the symptoms during my junior year of highschool. Being an active swimmer and dancer, this pain was not acceptable. I originally went to my primary physician due to knee pain, and was sent to physical therapy (Which I'm convinced made my joints worse). After three months of no results, the disease had not only gotten worse, it had moved to my fingers and wrists.

Step 2: False Diagnosis and a bad doctors visit

By this point, it was taking me a god awful 45 minutes to get out of bed and moving in order for the morning stiffness to slightly go away. My fingers however, continued to hurt througout the day. Because of the pain, I was unnable to dance and swim certain events. Frustrated from the pain, we decided to return to the doctor. She then falsely diagnosed me with Chondromalacia Patellae, a softening of the cartelige under the knee-cap. She also ordered that we go see an Osteopathic doctor to get my hands checked out.

This was by far my worst experience, considering the osteopathic doctor then suggested that I may have a tumor growing on the inside of my right middle finger bone, and that it may cancerous. We had an x-ray and mri on both hands and knees, the results showed some slight swelling, but no cancerous tumor. It also showed that I did not have Chondromalacia Patellae.

Step 3: The Sports Doctor

By this time, my mom had become extremely irritated at seeing her daughter in pain, and having no answers. So being the awesome strong minded person that she is, she took matters into her own hand. She did the research and soon had me in to see a very highly rated sports doctor. He actually suggested that I go see a different physical therapist, for it may have something to do with the way I walk and my joints. He was the first person to suggest joint damage, which prompted more research from my mother.

Step 4: The Rheumatologist 

After the new physcial therapy treatments proved unsuccessful also, she immediately made an appointment with a rheumatologist (who has seriously saved my life). He looked at my symptoms, joints, and mri's and diagnosed me with what I would call sero negative rheumatoid arthritis. Meaning that I have all the symptoms and signs of RA, but my blood test proved negative for the RA factor. I continued to remain negative unil this past June (2011), when my diagnosis was changed to adult rheumatoid arthritis. \

Recently:

I have moved away from my rheumatologist, but have continued to see him (Seriously such an amazing doctor. If anyone needs a juvenile rheumatologist in Phoenix, let me know!). I have been on many medications (which I will soon post about!), and have been in remission once, but recent came out of it.


I hope my story can show how hard it is to become diagnosed with this auto-immune disease, and to show you not to give up if you are in the process. It can be treated, and it WILL get better. I will go into detail soon about the medications, and if you have any questions feel free to ask!