Update

Hi,

It has been a very long time since I have written on here! Here is an update on how my life and RA have been for the past year.

First off, the x-ray of my sternum showed nothing usual at all.

From there, I actually ended up moving back home after deciding to pursue a VERY different major than the one I had previously been studying; apparel design. Since then, I have been going to school full time, working full time, and on top of that I have another part time job. My arthritis has not gotten in the way!

I was on the enbrel shots for quit a while, but after one bad experience with hitting a vein and nearly fainting I began to research other alternatives. I tend to have high anxiety levels and this began to affect when it became time to do the injections. I still did them of course as they were a much better alternative than the effects of ra!

Shortly after this experience however I went to see a gastroenterlogist for chronic nausea. It was then that I found out that during my testing when I was 16, I was given a "pre crohns" diagnosis. I must thought little about this then because it shocked me to hear it. The doctor decided that by this point I must have fully developed the disease. Because of this, he recommended that I suggest remicade as an alternative during my next ra appointment to treat both conditions.

I took his suggestion and brought it up to my new rheumatologist at our very first appointment. (I finally had to switch from my juvenile rheumatologist at age 20! haha)  He agreed that this may be a better option for me and set up the initial appointment. For the first appointment I was unaware that you are supposed to have someone drive you because they give you a benadryl during the infusion. I did not take the benadryl and luckily I did great during the infusion. It only took about 1 week for me to really notice a difference, but when I did it was outstanding. I have had no morning stiffness, more energy, and no side effects that I have noticed. They doctors say that chest pains can be a complication, so they did x ray my chest. All seems to be going well! I have had 3 infusions to date and have my next one in about a month. (I go every 8 weeks). And even with my hectic schedule and constantly being on my feet (I work in retail) my joints are doing great. Before the last infusion I did notice a bit of stiffness a few days before my next appointment, but I was happy that it had lasted that long to begin with. I have heard it takes a while for this medication build up in your system so we will see how it goes!

As for the ra factor in my blood, I was told that the rheumatoid factor did show up positive on my last appointment, but that another test they did showed up negative. I will ask for the details on this when I go in next.

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.