It's kinda nice...

...to actually want to have sex with my husband.

That is all.

It's been a while...

And that's because I really haven't been feeling that bad at all lately! I guess the Enbrel is working, because I am working my butt off and not getting too fatigued. So, yay!

Although, I did have a flare last week. I am currently working 20 hours as a lab technician, teaching 2 biology classes, and taking 2 doctoral classes - and last Wednesday, it all caught up to me. I had been up late the night before grading exams and reading for my education classes (not easy stuff...) and the days and nights before had been similar to that. I had to get up early to get to work, so that I could finish grading the exams to get back to my students. I walked into my first class of the day, and the first thing they said to me was "You look tired. Are you sick?" I answered honestly, "Yes, but not "sick" sick, but chronic sick." By the time I had to sit through my 3 hour class, I was done.

I made a point to go home early on Thursday and veg out on the couch, watching Firefly (hence the shameless picture of my future husband, Nathan Fillion (my current husband somehow understands...)). It was a good way to make myself feel better. Since then, it's been pretty good. Let's hope it stays this way!

Vacation!

I just got back from a week long vacation to Disney and am totally surprised by how well I did, considering my RA! I walked pretty much for 4 straight days through the parks, and it wasn't until the end of the last day that I really really couldn't stand it anymore. This was unthinkable months ago, and we totally assumed that I would be renting a wheelchair to get through the week. So something appears to be working!

However, sitting in the car on the way home with Hurricane Irene escorting us back to RI did not help my poor little swollen toes - the low pressure was just a little too much!

Success!

Shoe shopping was a success this weekend! Silver strappies for the weddings, and then a cute pair of shoes for work (for good, short days of course)!

Shoes....

So today I went shoe shopping. I have to find a pair of silver shoes for the two (yes two) weddings I'm in the week of September 4-11. More about this later...Luckily, my two best friends decided on silver shoes to go with the navy and red dresses I have to wear. So only one pair of shoes needs to be found. (Although there are like a million cute navy shoes out this season...)

My obvious issue is that I have to find shoes that are comfortable enough to wear all day long, without me wanting to kill myself - or without requiring a day's rest to recover from (which I'll probably already need anyways). I also want CUTE shoes.

I was never much of a shoe person, until I started working as a professor, which required business professional attire. When I started working, I had a pair of chunky black shoes, and brown penny-loafers. Plus sneakers and flip-flops. However, eventually, I discovered a love of shoes. I love red shoes, I have a really cute pair of purple flats that I try to wear as often as possible, and I now have quite a few black shoes, one for every occasion. Now, this love started about a year, year and a half, before I was diagnosed with RA. I have all these cute shoes - and can really only wear the flats. Unless it's a good day, and I might be able to pull off my kitten heels

So, I am now picky about what shoes I want to wear, and am also limited by what I can actually wear...the hunt began today at DSW. And I found so many cute shoes, but they all had too high a heel. *sad face*

The hunt shall continue tomorrow.

Amazing!

Friday morning I was woken up to my doctor calling me. Apparently, he erased all of the ultrasound images he had taken the day before, and was wondering if I could come in to have hem redone. I went in, and within ONE DAY of taking the Enbrel, my swelling and inflammation had gone down significantly! That is a good sign the Enbrel is working, considering it normally takes some time to decrease symptoms...WOOHOO!

The image to the left is an ultrasound of a finger joint - the bright yellow areas are where there is heat, or bad RA activity, and the synovial hypertrophy is that entire black area, which is inflammation. I'm not going to lie, I think this is the coolest thing ever, every time I get it done. 

Here is a paper for anyone out there daring enough to read it on using ultrasound to manage and treat RA (I'm a scientist - we go for the data right from the source!): Using ultrasonography to facilitate best practice in diagnosis and management of RA

Enbrel to the Rescue!

So, it's been awhile...I actually felt pretty good for a couple of weeks there, and didn't feel the need to write about it. Other than the craziness of prednisone (seriously, I was like a whole different person...not cool), my body felt normal. I could walk wherever without my toes cramping up. I even went kayaking without much pain. But as the prednisone tapered off, my symptoms came back slowly. 

The past week has been rough. I started teaching my summer class, and after over a month off, it really wears me out. On top of that, the class is 30 minutes longer than I'm used to. That extra 30 minutes feels like hours.

But there is hope in sight. I was approved to start Enbrel (after making sure I didn't have TB or hepatitis...I feel like I would know either way). So today I went to the doctor with my first dose in hand. Enbrel is an injectable medication - so I have an auto injector that I have to administer once a week. I was terrified that I would do it wrong, so I wanted to have the nurse help me. The nurse at my doctor's office, Natalie, is great. She's so super nice. She did the injection for me, just so I knew what to do next time. 

But OWWWWW. It stung. In order to inject all of the medication, you have to hold the injector on your skin for 15 seconds. Longest 15 seconds ever....and to top it off, the medicine was cold (it has to remain refrigerated) so I could feel it going in under my skin. Ick.

My doctor wasn't too thrilled that I hadn't taken a dose yet, but what was I supposed to do? My last appt was 3 weeks ago, and I didn't get my test results to him until last week. By that point, it made sense that instead of taking up time that wasn't scheduled for me, I'd just wait. Whatever. He did, however, get to play with his new toy - a brand new ultrasound machine. It is really cool to me how you can see the inflammation and measure the amount of heat being produced at those site with an ultrasound. He examined my foot with it, and when he turned the heat sensors on, it lit up like a Christmas tree. No wonder it hurts so much.

Now it is a matter of time to see how the Enbrel works. I talked to a very nice nurse on the phone yesterday through my pharmacy, and she said that some people see results in 10-14 days, other within 3 months. We'll see.

The Double Edged Sword of RA

Prednisone...How I love you for making me feel 99% better. And how I hate you for making me irritable, hungry and full of unnecessary energy at weird times.

The Medicine Saga

Now, the only way to treat RA is through various medications. For those of you that don't know there are several levels of treatment that some with RA can go through.I'm am quixkly climbing the rungs...

1st level is just your basic anti-inflammatories or NSAIDS, like ibuprofen, aspirin, naproxen (aleve) and other prescription ones (I've tried two others, and have settled on one called diclofenac). These help manage inflammation - unless it's too inflamed. However, I will never forget my diclofenac. My doctor had me go off it early to get a feel for what my body was doing off meds. BAD IDEA. I couldn't move for two whole days.

2nd level is steroids. The most commonly prescribed is prednisone. I've been given this at times to try to tamper a flare.

3rd level are DMARDs, or disease modifying anti-rheumatic drugs. The first one tried is usually a drug called plaquenil, which is actually an anti-malarial. If you fail on that (nothing changes) you can move up to methotrexate. This is the most common medication prescribed to people with RA. However, it is a chemotherapy drug (the dose is much smaller) and induces miscarriages.

The final rung, if you fail with DMARDs (specifically methotrexate) are biologics. If you've ever seen the commercials for people with arthritis to live their lives better - you're listening to an ad for biologics. Humira, Enbrel, Orencia, etc. These are all drugs that must be injected directly into the body, either through IV or injections. Woooo.


So, I went to the doctor on Friday, and I've been taking the diclofenac and plaquenil for 8 weeks now. And I've only gotten worse. Last week, I was shocked at how much the heat and humidity caused my right forefinger to swell - so much that I couldn't straighten it. He took more sonograms of my hands and feet to see the inflammation and he said we need to move on. The next step would logically be methotrexate - however this is a problem. 


Getting RA at this point in my life has been an even bigger pain than it could be, all because I am planning on starting a family sooner rather than later. As I said above, methotrexate causes miscarriages, so I can't be on that drug. And it also takes 3 months for it work out of your system - so starting it now would just be a waste of time and money. However, in order to be bumped up to the biologics, you have to have tried and failed on methotrexate. I won't have any clue if methotrexate will work for me for at least a year or two. Now, getting pregnant will probably mean that symptoms will be reduced (the immune system gets repressed, and then it won't fight me anymore!) But, to not be on a stable medicine for that long is scary!


We decided to jump down to the steroids, and now I am on a course of prednisone for the next 25 days, starting high to kill the inflammation, and then tapering down until I'm taking 5mg every day. Hopefully, this will help me feel better (it already has at the high dose, I did a bunch of yard work today!) but there are so many crappy side effects, like mood swings and weight gain, that I have to deal with.


The one good thing to look forward to, which is funny in a way, is that my doctor found an area in my pinkie toe on my right foot where the bone is eroding. You're probably sitting there going "What the hell is she talking about? How is that good?" Well, if he can prove that my bones are already showing erosion, then he might be able to convince my insurance company to skip methotrexate and get me on a biologic. Just gotta wait until he gets a more powerful and sensitive ultrasound machine.


Another doctor's appt tomorrow - This time with my OB/GYN, just to keep him abreast of the whole situation....

The Beginning of The End...

So, in order to further my career, I decided to go back and get my Ph.D. While in theory, a good idea, the result could be disastrous at this point in my life. We'll see.

The point of this post was to describe my annoyance today. I am returning to my Alma Mater for my Ph.D (both for my bachelor's and master's degrees) and today went wandering around the campus that I spent years wandering. However, it took me longer to get everywhere because I had to find elevators. Obviously, as a healthy young college student, I could huff it up a few flights of stairs. Now...going up stairs is barely an option. I feel like a loser going to the elevator when no one can outwardly tell I need to use it. 

Grrrr.

Sleepy Saturday

There was no sun this week. None, not since last Sunday. Because I was so tired after dance this morning, I decided to take a nap this afternoon. I wake up, and it's sunny. I feel guilty for not enjoying the sun....

Dance and RA

I love to tap dance. I've been doing it since I was six years old, and still remember standing in the foyer of our house in my tap shoes teaching myself the difference between a shuffle and a flap. I dance all the way through high school and just got back into it about 2 years ago.

It's the one thing I refuse to give up so soon because of my RA. Which means I'm typically pounding my aching feet on the floor and probably doing some serious damage to my feet. Despite this, it makes me happy when I perform. It's an accomplishment. 


The reason I felt the need to write about dance tonight was because I fell in class this evening. I messed up a step, tried to correct myself, rolled my ankle, and lost my balance. I caught myself on my hands and fell backwards. My pride was hurt more than anything else. Although my shoulders are starting to hurt from catching myself.

It frustrates me. I used to be the one that remembered every step the week after we learned it. I never had trouble remembering what step came next. And that's what happened tonight. I forgot a step. I used to think about routines all week long, going over them in my head, tap dancing in the kitchen while cooking dinner. Now, I never think about it, because all I have on my mind is how much my feet hurt, or my hands, or my neck. I miss enjoying dance...now it's more frustrating than anything else. 


But I refuse to give it up just yet...

The Lucky One...

As I said in my previous post, every person's journey with RA is different. Apparently, I am one of the lucky ones...

My New Year's Resolution this year was to lose weight (like it is every year...), but this time I started strong. I was going to the gym in the mornings before work (and anyone who really knows me knows that this is amazing). I was eating well and I was actually starting to lose some of my extra weight. However, I kept having a pain in my right foot whenever I walked on the treadmill. Now, this pain had been there for a couple of months. I though I had kicked my husband in the middle of the night, and maybe bruised the bone. Eventually, it got worse and I went to urgent care. They took an x-ray, which came back negative for any breaks. I was told to take naproxen and rest it when I could. This amused me because one of my hobbies is tap dancing (although I did take a couple of weeks off). Looking back, that was the first symptom. A couple of weeks later, I noticed that when I rode the stationary bike (had to switch from walking for my foot), my hip would cramp up to the point of not being able to lift my leg into the car on it's own. I had to literally reach under my knee and lift it in. Symptom two. Then, we had two crazy snowstorms, very close to one another, and a couple weeks later, my shoulders still hadn't recovered. Symptom three. Then I noticed that my hands always felt like I had slept wrong on them (I like to curl them under my face). Symptom four. I finally decided to see my (new) primary care doctor...it was the first time he ever saw me.


This is where my story makes me lucky. My PCP is apparently a very good diagnostician. He picked up on my symptoms quickly and ordered the necessary blood tests (which were my first ever...I had been a very healthy person). My RH factor was pretty high, as was my sed rate, and my ANA (antinuclear antibody) was also high. ANA tests for autoimmune disorders, like RA and lupus. My doctor put me on a prescription NSAID (like aspirin or ibuprofen).

Less than a week later, I woke up in the middle of the night barely able to move. My knees, hands, shoulders...everything hurt to move. So, that morning, I had my husband take me to the ER. They took more blood, and some x-rays of my knees. The doctor there told me it was either RA or lupus, and put me on prednisone for five days. And what a glorious five days those were, although I felt like I needed to eat every three seconds. This would be the beginning of my love/hate relationship with steroids.


Shortly after all of this, my PCP ordered the tests to determine if it was RA or lupus. The Anti-CCP test came back positive, which meant RA. I went to my new rheumatologist before the results came back, but he knew just from my symptoms what it was. A couple days later...I had RA. 

All in all, from the first inkling that something was wrong to the day that I was diagnosed, it took my doctors less than two months to figure it out. Most people I've read about have had symptoms for 5, 10, 15, 20 years before any doctor would take them seriously. I was a lucky one.

It's been only two more months since my diagnosis, and I have a long way to go to figure out how to live with this. It's not something I can ignore and hope will go away. I've already noticed the limitations I have, and the changes I still have to make. Because I have to live with it.

Welcome!

After finding out that I have been diagnosed with Rheumatoid Arthritis (RA), I immediately began looking for blogs out there to get a feel for what I was going to go through. And what I've found astounds me, because every person that has RA has their own story. So, I thought I would add my own to the mix. I have yet to find someone out there with the same story as mine...

One other thing I noticed, was RA awareness (and other invisible illnesses) need all the help they can get and I want to be one of the many voices out there helping raise awareness for these diseases.

So here's my story...