Long time no blog, huh?

Well here have been some things that have been on my mind lately…

For those of you out their in a relationship (dating, marriage, life long partnership, etc.) how do you approach the topic of RA with your partner? Recently-ish I’ve found myself in a committed relationship and even though we’ve known each other on the grand scheme of things for a long time, most of the time I was in remission and then we drifted apart right before my RA decided to kick my ass again and now that we are dating again it’s kind of weird seeing what his lack of understanding about just Arthritis in general is.

And even though this really frustrates me because, as a wanna be advocate for arthritis, I want to get the word out that RA isn’t your grandparent’s arthritis and that also RA isn’t just (even though there are those out there who have) deformed hands, or that it just effects your hands. Also because I have some joint damage from RA, my osteoarthritis symptoms kick in when I go up too many stairs and I think then that most just jump to the “my bum knee” conclusion instead of seeing what is really going on in front of them.

But going back to my boyfriend…I don’t want to just jump on what he’s saying and tell him, “You’re so wrong” or “you have no clue what I go through” or anything like that because most likely it is him legitimately not knowing the difference between RA and OA or really just what Arthritis is.

So I’m asking for your advice. Do you have any experience with this? What has or hasn’t worked for you in trying to get someone to understand this disease?

Thanks for your help, I appreciate you guys so much!

I am also tired because this is the first week of classes where I have had to study.  Last week was pretty much just getting re-aclimated into college life, going over syllabi, the first intro lecture into the subject that I was in.  But this week was full on reading assignments, study guides, research that will build into a midterm/final assignment, and today an audition for the performance course I am in as a part of my dance major.

I am now bruised (6 new ones just from my audition today), tired from my days that start the latest at 8am and being physically active again after a month of being lax on a workout of any kind, and I’m pretty sure my brain hurts from studying again.  But for some reason, I really feel alive right now.

Last semester I really wanted to take it easy with my new Resident Assistant job, and re-adjusting to new medication (then switching from Enbrel to Orencia), and just realizing that my disease was getting worse.  But I think that all of the down time and the less packed work/school load was just letting me dwell more on how I was getting worse and wasn’t really giving me any more time to rest or relax or focus on my health anymore than my current schedule is.  And now with my more packed schedule I have to plan when I want to go to the gym or work out on my own or do homework, etc. and I think it really has worked out for the better.

However saying all of that I do feel that this is my limit of having an active schedule while still not draining myself to the point of severe fatigue (like go to the hospital fatigue).  And if my RA does start getting worse I may have to switch my work schedule around to help me rest more or drop a class, and I’m working with my supervisor and Disability Support Services on campus to help me remember that because I am underneath it all one of those fight through the pain people that doesn’t always quit while I’m ahead.

…so this has just been a rambling of what has been going on in my life right now/what’s on my mind

How is everyone else out there?

I don’t know if I hit a vein or what in my leg (this is my third injection w/ Orencia so my reactions to each shot vary a little from time to time) but good god I have this bruise pain where the actual shot went in and then down my left leg there is this deep pain that is making me squirm in my seat while I am writing this post. I will find out tomorrow if I did or not b/c I have done this before with Enbrel and that gave me a gigantic bruise and caused a blood vessel to rupture on my abdomen which is still there today (see picture).

Anyways I thought I was going to cuss more hence the pardon my french but as the pain is subsiding as I am writing this post I’m just glad that those minutes of torture (total overstatement there) are over.

I’ll keep you guys updated and may post pictures of this reaction, if there is any and look for pictures of my lovely reaction to Enbrel.

And sorry if this post is horribly written but I just let this blog pour out of my brain.

Via Bing Images

So incase you haven’t heard, Orencia is now available in Sub-Q injection from and tonight was my first time doing a biologic self injection since Enbrel (which ended badly) so I was a little nervous about this new injection.

But to my delight, it wasn’t that bad.

The process was similar to my weekly MTX injections and of course the Enbrel injections that I had done in the past so I was at least comfortable with that process.   As far as the injection itself it was a pre-filled syringe shipped that had the easy to grip plunger which is a little easer to hold than the tiny MTX syringes that I get from Walgreens.  I am glad to say that (for me) the Enbrel shot didn’t sting at all!!! This time I did however keep the skin on my leg pinched the whole time until the needle was out so maybe that was the trick and also maybe that spot in my leg had less nerve endings, really I don’t know but this was my trick to success so I am going to do this exactly the same from now on.

And as far as side effects the only ones I’m feeling so far is a little headache, which I usually got from the infusions anyways so I was somewhat expecting that, but no nausea to speak of so far, you can tell that I got a shot but there is no site reaction to speak of so far…

So for those of you out there that may be switching from infusion to injection like me, just breathe, find where the least amount of nerve endings are for your comfortable injection site, and if you really want to be prepared break out the ice pack and ice the area 30 min before (which could be something to do while you are waiting for your syringe to come to room temperature!)

So if you know someone who dances or are a dancer yourself, read this.  It has some good advice and can be just a laugh for those of you out there who have heard this questions once or twice.

via http://ascho3.wordpress.com/2011/12/14/how-to-talk-to-a-dance-major/

I feel like most of the time when I’m at school isolated from my friends and family at home I feel like I’m all alone with my arthritis and that I have to battle it all alone.  But going back home and having family members ask how I’m feeling today and how my last infusion went just let me know that there are people out there that care about my disease and how it is affecting me.

And yes the pain was there during that week long break and I had to lean on the Hydrocodone crutch once or twice but overall I was able to take it easy, not over exert myself, and get some rest for once and for that it seems that my body is thanking me for most of this week.  Now I am just counting the days until I can go back home (7 days), the days until finals start (10 days), and the days until winter break (17 days).

Lately it seems that these flares are popping up more often and I’ve been dealing with almost constant pain at some level and even though biologics can be great and offer a lot of relief, they are thoroughly frustrating in the fact that they take so long to kick in.

At least it is getting closer to the holidays and I will be able to spend more time with my family and be closer to my doctor.

Happy holidays everyone!

I feel like I’ve gotten into this habit lately that if I’m in a flare I tend to get overwhelmed that I am debilitated by this disease and feel that for some reason the best way to help it is to stay in my room and let the pain run its course and end up in my own sick sad little world.

But I think from now on I am going to change that. If I’m in pain in my room, or in a class, or in Disney Land, or a concert, I’m still in pain either way so why not change my attitude about the situation and have as much fun as possible (yes limited mobility fun but fun nonetheless).

So even though I love this song by one of my favorite bands Incubus, I do not want to be in my own sick sad little world anymore, I want to live my live as much as possible with my Rheumatoid Arthritis.

I was ready to have some pain today because their is a cold front blowing in tonight but I was nowhere ready for the level of pain that I was in today.

I kept on waking up on and off through out the night last night. I slept with my newly supplied wrist guard to help things out a little bit for the next day which it did help my wrist but there were many many more joints involved today. I woke up with my alarm this morning but because of the awful nights sleep I had last night I snoozed my alarm for another hour trying to get more rest before my first class of the day. An hour later I was not feeling more rested or less in pain and to add to that I was really nauseated from hydrocodone that has been jacking with my stomach (which I attempted to stop because of this fact but had to start again today after this major flare) and knew that I was not going to be able to go to my first class of the day. I called my mom after I finally got some food in my stomach and filled her in on the situation and after that found my heating pad and took some hydrocodone and then laid down for a nap. Later on, I found out that my second class of the day was cancelled and because I was walking around like Frankenstein and hadn’t really stayed in an upright position really at all for most of the day, I e-mailed my speech teacher and told her I wouldn’t be in that day, and my boss as well and went back to sleep again.

I woke up later in the day around 4 and finally ate lunch then went over to Walgreens to grab my refill of Plaquenil, came back to my room and attempted to straighten up, eventually got some dinner, and have been relaxing for the rest of the night.

I’m hoping that I’ll be able to go to class tomorrow but worst case scenario I will be sitting and observing my dance classes. I’m wondering if I should call my rheumy and fill him in on the situation or just tell him during my next Orencia infusion.

Check back in later for the updates.

This is a very interesting development happening on the research front for Rheumatoid Arthritis.  Hopefully it will lead towards a treatment or at least better and more effective medications some day.

Check it out!

the case of the missing monocyte.