Welcome!

This blog is to show people what it's really like to live with Rheumatoid Arthritis at 18. When I was diagnosed, I searched the web and found very few accounts showing the difficulties of dealing with this disease at such a young age. On top of this, there were NONE that described the college experience living with RA, which has inpired me to start this! I hope my account can provide hope and support to RA fighters of all ages, and especially to those who have just been diagnosed!

Tuesday, January 17, 2012

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. 

Monday, January 16, 2012

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. 

Sunday, January 15, 2012

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!