True Grit
Posted by My RAD Life in Alternative Medicine, Dairy/Casein Free, Dealing, Diet, Doctors, Drugs, Fitness, Gluten Free, RA/RAD, Running/Marathon on October 9, 2012
GRIT: noun – firmness of character, determination or strength of character
I think some people are born with a natural abundance of grit. I think my grit, the will to persevere and the optimism to keep going is learned, practiced and fickle.
I’m still trying to figure out why sometimes I’m so strong and determined, and why other times I want to pull covers over my head and never leave my bed.
I think something about the beginning of October triggered the ostrich response in me. Suddenly I bounced from I can do anything to I don’t want to do anything anymore.
When I was diagnosed with my RAD new disease back in March, my doctor marked autumn as the time when I could possibly be in remission and we’d be looking at getting off the methotrexate, and later the Enbrel. My September doctor’s appointment was instead met with an increased dosage of methotrexate and the news that the MTX may not even be working yet. Doc’s new goal for remission: spring 2013.
That’s actually kind of good news because it means when it starts working, I’ll feel a lot better. But also, really?!?!
I left the doctor’s appointment feeling fine about it, but then October came and all optimism drained out of me. I was suddenly so, so, so done with MTX day and freaking injections. All things gluten appeared appetizing, dairy seemed impossible to avoid, my vitamins made me nauseous, and I felt like if I even had to look at fish oil again, I’d vomit.
What’s the point? What if it doesn’t go into remission? Am I really going to do all of this forever? I don’t want to have this life. I didn’t ask for this. F#@! RAD and all the stupid S**! that goes with it.
I stopped taking the vitamins and I laxed up on the fish oil. I cheated on my diet. But I kept going on the drugs.
My negativity quickly started to annoy the hell out of me. So there I was, standing over my morning folic acid and fish oil supplements, a wave of nausea overwhelming me, and I snapped. Out of it that is.
My grit was back.
What’s the point? The point couldn’t be more obvious or important – it’s my health. Is it worth trading because I’m a wuss about injections, I hate swallowing pills, and the smell of fish oil is gross? Obviously not.
So I’m staying the course. I’m back on track. (Although I am being a bit more relaxed about supplements for my sanity’s sake.)
I’m thinking March is gonna be a great month for me. I’ll be running my first marathon and hopefully I’ll officially be declared in remission and will be breaking up with methotrexate. Maybe Enbrel and I will even get to say goodbye. Here’s hoping.
In the meantime, I’m happy to report that I think the higher dose of methotrexate is starting to work. My compromised immune system and the changing season has led to a cold, but otherwise I feel great. No joint pain, no feet pain, less fatigue, less trouble sleeping. I even went on a 12 mile run a couple weekends ago.
Now I just have to figure out how to keep my grit from disappearing on me again.
Mediterranean Spaghetti Squash Salad (Gluten Free & Vegan)
Posted by My RAD Life in Dairy/Casein Free, Diet, Gluten Free, Recipes on September 24, 2012
You ARE a Beautiful & Unique Snowflake
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on September 22, 2012
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
No More Needles
Posted by My RAD Life in Dealing, RA/RAD, Symptoms on September 17, 2012
Maybe this is the answer to my last blogpost on the woes of self injection. Replacing needles with lasers and a puff of air? Sign me up!!
http://techcrunch.com/2012/09/13/no-more-needles-painless-laser-injects-drugs/
Injection Woes
Posted by My RAD Life in Dealing, Drugs, RA/RAD on September 13, 2012
I’ve been doing so well on my Enbrel injections that I started thinking I totally had the hang of it.
Last night, I stuck to the routine. I took my shot out to let it warm up, I tried to relax. I iced my right thigh and sterilized the chosen injection spot. I checked the expiration date and looked to make sure the liquid was clear and the little bubble was acting like it was supposed to. I took the lid off the pen and pressed it to my thigh.
And, boom. My heart starts racing and my thumb REFUSES to press the blue button to release the needle. What the hell? I’ve done this a bunch of times now. I know how much it hurts (yeah, sometimes it hurts quite a bit, but I know I’m able to deal with it).
I actually had to talk myself down from a full on panic attack. And then, of course, I got frustrated at myself for not being able to do something so simple. I put the pen down and paced my apartment, trying to calm my nerves.
Finally, I was ready to try again. Pen on thigh, my thumb pushed the button. NOTHING. I hate when this happens. I mentally prepare for the shot, and you push the button and for some reason it doesn’t release the needle. Ugh.
It took a couple more tries to actually get it. Re-positioning the needle, trying the button… When it finally did go, of course I wasn’t prepared, so I was a little surprised and probably pushed on the needle harder than I should have. End result: painful injection (it stung more than normal, bled a bit, and I wouldn’t be surprised if it bruises), mentally exhausting, and I’m dreading next week.
I don’t want to discourage anyone. There is a part of me that knows the weekly injections are an easy task that I’ve already mastered. I shouldn’t make it such a big deal.
Anyone have any tips for getting over the mental block of self-injecting? Or tips on making the experience less painful? Thanks to all of you! ❤
Dropping the RA Bomb
Posted by My RAD Life in Dairy/Casein Free, Dealing, Diet, Gluten Free, RA/RAD, Relationships, Symptoms on September 8, 2012
I think that authoring this blog has really helped me open up about my RA. A lot (not all yet, but maybe I’ll get there) of the shame and nerves that came with “admitting” to someone that I had this disease have faded.
I’ve had two recent experiences telling a date about my RA. The first time I’d ever told anyone about my RA aside from close friends and family and doctors was on my second date with a very sweet guy (maybe a little on the early sign, but I don’t think there are hard and fast rulles with this). We were at a pretty nice, new restaurant, where, being gluten and dairy free, I couldn’t eat half the menu. I asked the waiter about some gluten-free options and happily chose a modified scallops dish.
My date kept inquiring about my diet, giving me ample space to drop the RA bomb. “Are you allergic?” No, not exactly. “Are you trying to lose weight?” What? No…
Finally, toward the end of dinner, I brought it up. The timing was probably a bit odd, given all the opportunities he’d presented me with before. At any rate, I said something along the lines of, “Since you were asking earlier, the reason I’m on this diet is because I was diagnosed with Rheumatoid Arthritis in March.”
Ka-boom. The RA bomb had landed.
I went on to explain that the elimination diet helps you determine if an allergy or sensitivity to a certain food is making your symptoms worse.
He just nodded, asked how I was feeling. Then he asked if it was hard to do physical things, and immediately apologized for his invasive question. I didn’t mind it though, it’s a fair question. I hadn’t heard of RA before my diagnosis, but if I had, it would have probably surrounded the disability/disfigurement horror stories of the disease.
So I brushed it off, saying, “No, it’s really under control with the meds. I barely notice it.” Yes, that’s kind of a lie. It’s not totally under control and I do notice, in fact, I’m probably hyper aware of all symptoms.
I figured that if we kept hanging out, it would inevitably come back up.
I’m happy to report that the world didn’t implode. He didn’t run away and never call again. He didn’t treat me like a victim. It just was a fact.
The second time was similar, but the window wasn’t diet, it was drinking. Since I’m on methotrexate, which is hard on your liver, I’m not drinking much (my doc says 4-5 drinks per week – no, not all at once! – is fine). So we were running, and he was talking about wanting to not have any alcohol for 30 days, so I talked about how I really wasn’t drinking much either.
Then, ka-boom! The RA bomb once again landed.
He asked questions about my treatment and I answered honestly, and hopefully without any trace of shame. I even told him that my symptoms aren’t totally under control, but that clinical remission is my goal and hopefully where I’m headed.
Again, he didn’t run screaming for the hills. He did call me again.
Lesson learned. Your honesty and courage allows other people to react in a similarly courageous, empathetic way. So, no more shame. Thank you blogosphere for allowing me to reach this point. From here on out, I’m owning it. I’m no longer admitting to a shameful thing, I’m informing someone about a part of my life.
Almond and Coconut Milk Yogurt
Posted by My RAD Life in Dairy/Casein Free, Diet on September 8, 2012
I have recently discovered non-dairy yogurt made from almonds or coconut milk, and I have been loving it. Before trying out being non-dairy, I used to pretty much have a yogurt every morning. Not only is this yogurt yummy, it has the live cultures (those good for you bacteria) of regular yogurt. Yay!
Monday Morning Motivation
Posted by My RAD Life in Dealing, Fitness, RA/RAD, Running/Marathon, Symptoms on August 27, 2012
The last couple weeks have been tough. I moved into a new condo and, very ambitiously repainted the whole thing and did all the moving myself. This of course led to long days and nights and completely messed up my schedule.
Not only was I exhausted from the grind of repetitive paint strokes and heavy lifting, when my schedule gets off, a bizarre sort of insomnia sets in. I’m exhausted, but I can’t fall asleep. I’m in bed, but my mind is wide awake and I’m hyper aware of every ache and pain in my body.
Needless to say, my workout schedule got off track. This only led to my sleep schedule going further down the late night rabbit hole, leading to more pain.
So late last week, I decided I had to reset. I forced myself to get up Wednesday morning to run, despite being up until about 2am reading to try to turn my brain off. Than, Thursday, I made myself wake up to lift some weights. I took the weekend off to do a lot of apartment rearranging and resting, and this morning, I’m proud to say I woke up before my alarm feeling well rested.
Hopefully this means my schedule is finally reset and I can go back to less insomnia and less pain.
For those of you out there stuck in a routine that’s not working for you, my advice is simple: break the cycle. I know, I know, WAY easier said than done. But I didn’t say it wasn’t going to suck, or that you had to be graceful. The point is just to bust out of your rut in anyway available to you. Sometimes baby steps only take you so far, sometimes it takes a leap (or, if your feet hurt, one giant, gentle step :).
My Left Wrist
Posted by My RAD Life in Dealing, Drugs, RA/RAD, Symptoms on August 21, 2012
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
This isn’t mine, but it’s similar to the style I was wearing.
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!
Post injection. It pretty much matches the other side now.
Living Without Limits
Posted by My RAD Life in Dealing, Fitness, RA/RAD on August 6, 2012
Me making the descent off the mountain.
“Once we accept our limits, we go beyond them.” – Albert Einstein
I had the type of weekend that can replenish your spirits and remind you that your disease is, to some extent, limiting only to the degree you allow it to be. I’m not saying that the pain you feel isn’t real or that the physical restrictions aren’t there, they are and I feel for you. I’m saying that the desire to shut down and decide things will be too hard to try is enticing.
It’s easy to think your disease wouldn’t allow you to go to that party or take part in that event – thoughts of fatigue, joint pain and worse circle your mind. This thinking is cyclical in that it makes you feel even more limited, thus making you want to try even less.
So this weekend I threw that thinking to the wind. I climbed a 13,574′ mountain, went camping, then followed it up with climbing a 14,067′ mountain for good measure. It was challenging, I think every muscle in my body is sore today, my wrists and ankles are extra tender, and it felt great.
Living a RAD life is not about being limited. It’s about moving beyond limitations.
It’s about setting BIG goals, and then setting the mini-goals to help get you there.
See that rock halfway to the halfway point? I’m climbing there. See that patch of grass halfway from here? That’s my new goal. Choose a landmark halfway to your big goal, get there, then choose a new halfway point. Then a new one. Then a new one until you are only a step away from that goal.
Living a RAD life is about knowing your body, but also challenging it. It’s about taking care of yourself mentally and physically, while pushing the boundaries further.
It’s about feeling alive. And if you are reading this, you are most definitely alive and have every reason in the world to celebrate.
Cheers to you. It’s your life, RA or not, live it without limits.
My RAD Life 