Here I sit, another Valentine’s Day fast approaching. I have never been a big fan of Valentine’s Day – even when I was in a relationship - but being single during this holiday is a decidedly more annoying and alienating experience than is being attached and simply ‘above’ it all. Choosing to eschew the flowers and candy and overpriced dinners that are the hallmark of February 14th while being part of a couple is one thing; having to suffer through the parade of balloons, roses and horrid jewelry commercials as a singleton is quite another, and I know which one I prefer.
This coming Valentine’s Day will be my third in a row in the latter situation. Now that I am on the other side of 30, I am starting to have visions of a Bridget Jones-like existence sans Mark Darcy stretch out before me. Hell, I don’t even have a so-bad-he’s-good Daniel Cleaver on my horizon.
So it is this mind frame that contributed to what I have just done, which is to sink to a new level of
ridiculousness: I have entered a contest to have my virtual celebrity boyfriend
come play a private concert at my home on Valentine’s Day.
But really, it is the blizzard’s fault. If Baltimore hadn’t just been buried under 24+ inches of snow, my office would not have been closed today. If my office had not been closed today, I would not have been at home watching Ellen while wrapped up on my couch feeling sorry for myself, and would therefore not have known about this contest and could not have entered it.
But there I was, all cold and knees hurting, cuddled up on my big red couch feeling like the winter will never end, feeling like the winter that has become my dating life will also never end, when I saw it on the bottom of the TV screen: Go to EllenTV.com to win a private concert with Joshua Radin on Valentine’s Day.
Seriously? My reserves were too low to resist. My visions of Bridget Jones faded away and in their place was the image of me (thinner), draped elegantly across one end of my couch looking bewitching while a completely dreamy musician sang me love songs and stared into my eyes. So, in this fit of delusion, I trotted over to my laptop and typed up, in 1500 characters or less, why I should get the private concert. I believe my reasoning went something along the lines of 'He is dreamy, I am single, and I have RA. I deserve the concert.'
Clearly, I did this under the knowledge that I never win anything, so I won’t have to actually be mortified by the fact that I am behaving more like a 13 year old than a 31 year old were he to show up at my door, guitar in hand, this Sunday.
Except of course, that I’m sharing it with all of you here.
What can I say. I live for nothing
if not to provide entertainment to others at my own expense.
I had my second (spa) appointment with my new rheumatologist this past week. Happily, since it wasn't the first visit, it didn't involve as many tests or x-rays, just a normal visit with all the folks on my team. If not for the physical exam by my rheumatologist, it might have felt more like a coffee date with friends.
For the most part, I've been continuing to do well. I've been burning the candle at both ends work-wise, so it's no surprise I've been beyond tired. I think I would be tired even if I didn't have RA, so it's a little hard to tell how much of it is my schedule vs. my immune system. Probably, the RA just bumps up the exhaustion factor a few (or many) notches. Nothing has been too swollen, and most of the pain that I have is fleeting- it doesn't stick around and kill my soul anymore.
I did mention that my left knee had been bothering me some and that was new, but again, the pain was sporadic and didn't seem to be settling in and taking over like it used to do, so I wasn't feeling worried about it.
All in all, considering what I have and where I've been, I'm doing pretty bloody fantastic- something I've been thinking about more and more. I don't feel like I did before RA- I do still have flashes of pain, sometimes sharp, and occasionally, there is swelling or stiffness. Fatigue continues to be the most persistent of all my symptoms, but generally, I feel my RA most now when I hold a position too long or do something repetitively. My joints begin to take on that rusted out feeling, but if I move positions, it generally subsides.
Some people might even say I'm lucky, and in some ways, I am. My meds are working. Obviously, if I were really lucky, I wouldn't have a stupid chronic disease and wouldn't need meds to work, but considering that I do, it's hard to feel like I can complain these days, especially knowing how much worse it was and could be.
Nonetheless, when I got up onto the table for my exam, my left knee, the one that has been bothering me a little, had some fluid on it, a sure sign of inflammation. So, we are adding sulfasalazine to the mix of hydroxychloriquine, and eternacept I already take. Maybe I'll call this new cocktail the 'Eternazinequine.' Good thing I don't have a problem swallowing pills since this ups it to ten a day.
A year ago, I would have been incredibly bummed out and upset about this news. Having to add yet another medicine and two more pills a day to my routine would have made me feel angry, annoyed and scared and probably sent me into pity party mode, at least for a little while. Instead, I haven't really thought too much about it and don't feel freaked out about taking yet another weirdo medicine, I mean, what's one more at this point? I don't know if this reaction is because I am feeling so much better these days or if I am simply at a place where I am more acclimated to my new normal, or a combination of the two. Either way, it seems like a positive thing that I don't feel freaked out, whatever the reason, so I'm not going to overanalyze it.
Knowing that I have some fluid on my knee makes me feel a little uneasy- after all, for all my good 'luck,' feeling good is never something to take for granted. It could all change very quickly for the worse BUT I am not going to dwell on that. I'm going to take my meds and enjoy feeling (mostly) good while I am.
Now, it's time to go observe the cocktail hour.
If you haven't already, check out my latest article at MYRACentral.com and tell me that I'm not the only one who does this. . ?
It's a new year and a new decade, so I thought it would be interesting to take a look back and get some perspective on where I am now compared to where I've been. The best way I know to do this is to take a look back at past journals, so I fished out my journal from two years ago - not long after I had been diagnosed - and started reading. I have purposely not used my blog as an online journal, preferring to keep my deepest, unprocessed thoughts and feelings private, but I think these entries reveal what having RA was really like, especially in the beginning, in a stark and honest way and therefore, it feels right to put them out here now in an effort to keep shedding light on what is often an invisible and misunderstood disease.
I think these excerpts speak for themselves.
January 3, 2008
I had my appointment with my neurologist today, whom I like very much. She took my whole history, including how my RA first presented itself. She asked me about my neck and recommended physical therapy for me. She also commented on how much my lower body is less affected and stronger than my arms and upper body. She sent me down to get neck xrays to make sure it is only (only?) the RA causing so much pain and stiffness. She really seemed to empathize and get what things are like for me- noting during the exam that it's weird how I look perfectly healthy and fine, but it's clear from a closer look that I'm struggling.
So I got the neck xray then stopped by my rheumatologist's office to see about the precertification for the drugs- it may take another week, which is really frustrating. Everyday I'm in pain. I want the meds.
My first reaction about the physical therapy was 'ick. not more to do.' I feel like I am taking on another full time job managing all of my health things. I think 2008 is going to be the year of health. I'm basically dating my RA. How delightful.
I have been feeling glum and hopeless. I cried myself to sleep last night in a way I haven't done in ages. My life just feels entirely different and forlorn. I was such a healthy little girl, running around with my brother climbing trees, riding my bike all over. Now, it is hard to lift my arms overhead or walk. I do not feel any hope. I just feel dulled and distant, like there are shades over and around everything.
January 5, 2008
I am lonely, and I'm sad that I am sick. It is overwhelming to feel my life become so different, to know that I can't ever not have RA now that I have it.
January 16, 2008
My precertification finally came through for my meds on Monday, so I picked them up today and have my appointment on Friday with the nurse, so I am happy about that. Though, at this point in time, I feel so depleted that I honestly don't actually feel anything like happiness about anything. I feel dampened and kind of shattered emotionally. I have a feeling of wanting to run away and start over and have a totally different life somehow.
Obviously, or evidently, I am feeling quite downtrodden about most everything. Twice I have nearly started crying on the subway. I suddenly felt my life in that moment felt alien and strange and so far away from what it ought to be. I choked up and had to hold back the tears that had welled up in my eyes. All I wanted was to escape and not feel smothered by everything. Everything just feels worthless. I just feel disconnected from everything around me and it makes me want to curl up and hibernate. I go from feeling so raw and exposed and grated to feeling nothing but emptiness and this heavy, dank solidness that feels like it's a fog settling into me and closing me off.
When does it get any better? What does it feel like, to feel anything other than nothing?
February 2, 2008
Luckily, I am feeling much more myself and much less pitiful about the outlook of life in general, and mine specifically. The reasons for this are, I'm sure, because I think the meds have begun working, and I am not in a near-constant pain. It is amazing what pain- physical pain, can do to your emotional and mental state.
I am feeling quite a lot better - sleeping so much better now, which is such a profound relief. My neck still bothers me quite a bit and my poor little toe is, I think, permanently deformed, and therefore painful still, but I feel so much better than before. With each improvement, I realize more and more how bad it really was, how bad it can be.
February 20, 2008
I had a massive reaction at my injection site - about 2.5 inches in diameter, massively swollen, red and throbbing. It looked like I had been stung by a man of war jellyfish or some awful and giant, potent creature - but no, it's just the medicine, that's all. It's better now - it just looks like someone slapped my leg incredibly hard.
February 25, 2008
Kate and I headed down to Loreley for Kelly and her brothers' birthdays. They rented a room since there were three of them, so it was great fun. My feet were killing me, but I got up and danced anyway, and it was fun to be out in the city. Kate and I went to dinner afterwards for burgers- we were starving. Luckily, it was close by as my toe hurt so badly by the end of it that Kate had to help me walk home. RA sucks.
Sunday, I pretty much crashed and was in bed at 9pm. I am still quite exhausted, so off to bed I go again.
Reading these entries from my past makes me realize how much has changed since then, but I think the biggest change between now and then is not in me, but in the RA community itself. I wish that I had been able to tap into a network of others like me back then, but at that time, most of my google searches turned up nothing but academic or medical sites. Most of the organizations I found about arthritis seemed to cater more towards people much older than me who were dealing with osteoarthritis rather than autoimmune forms of arthritis.
In my darkest moments, I felt completely alone and isolated as I struggled with the physical implications of having a disease, but I struggled more with intense feelings of isolation and depression because it felt like I was completely alone and misunderstood.
I wasn't the only one that felt that way.
Sick of being sick by ourselves, so many of us have turned to the internet and created a space of our own to understand what this disease is in a larger context, and to make connections with others in real time who are coping with many of the same feelings and questions. I know that I am stronger and better in part because of all of you.
Several months back, I wrote a hypothetical post imagining what would happen if the popular reality TV show The Bachelorette featured a young single gal who happened to have RA. I myself have no desire to go on The Bachelorette, but there is one reality TV series that I secretly fantasize about being on: Dancing with the Stars.
Read the rest here!
Happily, I have found a new yoga studio here in Charm City called, not surprisingly, Charm City Yoga. Over the last three weeks, I’ve been trying out different classes to find out which ones will work for me. I’ve found one teacher whose class I really enjoy, and her teaching style reminds me of some of my favorite teachers back in New York.
Her classes are pretty difficult. They are marked for all levels, and she is great about giving different options, but there is no doubt about the fact that you are in for 90 minutes of hard, invigorating work. I usually have to modify poses slightly or back off so as not to aggravate any of my joints, particularly the smaller ones. It is not uncommon for me to pause after a sun salutation or other pose to roll out my wrists and gently stretch out the tendons and ligaments. While I don’t think I stick out like a sore thumb, it would only take a little observation to guess I’ve got something funky going on.
This past Saturday after class, the teacher was standing by the door as I put my blocks away, so I stopped to thank her for such a great class. She said thanks, then paused and asked casually if I had anything going on with my wrists. I took a deep breath of hesitation, unsure I felt like taking the time to go into It All, but then went ahead and told her that I have rheumatoid arthritis.
All of you can probably imagine my shock (and infinite delight!) when, instead of responding with a blank stare or making one of several well-meant but ill-informed comments such as ‘Well, now is the time to have RA’ or ‘but you’re too young to have arthritis’ or fill-in-the-blank with your favorite lame response, she said, completely unphased: ‘Wow. How are you doing with that - does the yoga help?’
It took me a second to recover. In my mind, I had already geared up to explain that RA is not osteoarthritis, that it is a chronic, autoimmune disease that affects my entire body, not just my joints, blah dee blah dee blah. Instead, I told her that it helped quite a bit, but that it had taken me a long time to be able to practice again. In fact, that class had been the first time since RA that I had practiced arm balances (VICTORY!!!! Just don’t tell my RA.)
She then went on to ask if I was on any steroids, and we ended up conversing easily about the meds I do take, how the yoga has helped, whether or not I am in (knock on wood) remission, and she inquired if I had ever tried acupuncture.
Indeed, I lamented that I had been meaning to for quite some time, but hadn’t yet, so she recommended an acupuncturist she goes to that has a practice nearby. Such was my surprise at having a well-informed, compassionate, non-judgmental conversation about RA that I had to remark on it. I told her most people don’t even know what rheumatoid arthritis is, let alone what type of meds might be prescribed as treatment. She nodded her head as if she totally understood, and then smiled and told me she was a massage therapist. Score. I got her number along with the acupuncturist’s.
If only every conversation went along these lines when you told someone you had RA. I feel like the world would be a completely different place to inhabit, and a much easier one at that. It was amazing how much relief and happiness I felt when I realized I didn’t have to explain what RA was, what it does, and what it likely means for someone my age. Instead of wasting so much energy explaining, I was able to simply communicate and have a dialogue with someone about what I was going through. I didn’t feel self-conscious, annoyed, frustrated, or like I needed to deflect pity. It was, quite simply, great. I already felt terrific from the yoga, but this experience left me feeling lighter in spirit than I have in a long time.
So, to my new teacher, thank you, and I’ll be back next week.