Tag Archives: rheumatologist

I’m Living a Label

Not much has changed since the last time you guys heard from me. I’m still in remission and relatively pain-free except on rainy days.

I’ve been seeing lots of new doctors lately for reasons not caused by my autoimmune disease (thankfully and surprisingly). The questions always start out the same: what medical conditions do you have? What medications are you taking?

My response is usually, “I have Rheumatoid Arthritis, but I’ve been taken off my medication because I’m in remission and symptom-free.” Normally, that’s a good enough answer. Some doctors might ask me how long I’ve been in remission for, which I think is a valid question.

That wasn’t a good enough answer for the last specialist I saw. “You know, doctors give symptoms labels just for insurance purposes. If you really had arthritis, you’d be in pain all the time. There’s no such thing as remission for that disease,” she said. She said something similar about a more recent medical diagnosis that I’ve been given.

Huh?

Okay, I get it. You don’t want your patients to have self-fulfilled prophecies where they use the disease as an excuse for stuff. It does happen. But clearly lady, you don’t know me.

Personally, I think this is a dangerous game this “professional” is playing. For me, a diagnosis was a relief. I finally had a name for the suffering I’d been experiencing for quite a few years. In that sense, yes, I’m labeling.

But I’m labeling the condition. Not me. I don’t walk up to people and introduce myself like, “Oh hey! I’m Alyssa and I have RA.” Mostly because I’m an antisocial asshole and won’t walk up to you at all.

I also don’t think it’s fair for someone who isn’t personally experiencing what I’m feeling to tell me that my disease is not real or valid. Especially when said person is not a Rheumatologist. This woman hasn’t seen me at my worst, on the days where I was completely bedridden from the pain. I may not be suffering now, but my blood work has always said otherwise. There’s actually comfort in having a name for the monster you’re battling. It takes out the unknown that eats away at your psyche.

So, Lady-that-is-Having-Her-Credentials-Doubted-By-This-Person, I’m gonna stick with my labels, thank you very much. Until you can guarantee that I will never be sick or in pain ever again, or prove that I never had RA in the first place, I’m going to keep telling doctors that I have RA that’s lying dormant for the time being.

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RA And Sjögren’s Syndrome

Though I’m living more pain-free these days, I don’t think my eyes got the memo. Quite frequently I wake up feeling like I spent the night frolicking through a windy desert. Sometimes I’m forced to leave my desk randomly throughout the day (as I just did while in the middle of writing this sentence) to dart into the bathroom and attempt to put eye drops in my eye (I miss on the first try every time. Without fail). It becomes a bit of a problem when your job requires you to stare at a computer all day.

It’s not rare for Rheumatoid Arthritis to affect other parts of the body besides the joints. Sometimes certain medications people take for RA are the culprits. A lesser known fact is that there are other medical conditions that develop as complications to autoimmune diseases like RA. Sjögren’s syndrome is one of those complications. It is an inflammatory disease that affects tear and salivary glands. According to the American College of Rheumatology, between 400,000 and 3.1 million adults have Sjögren’s, and half of those people have a disease like RA or Lupus. A rheumatologist can test for it during a routine visit. I haven’t been tested for it, to the best of my knowledge. Either that, or I have been tested for it and it came back negative.

The good news, it seems, is that the symptoms of Sjögren’s may go away on their own. Certain RA drugs like Plaquenil may help alleviate symptoms.

Even though my eyes get dry and itchy and my mouth sometimes feels like it’s stuffed with cotton, I’ve found that drinking a lot of water and keeping artificial tears in my bag really helps. My favorite brands are Blink Tears and Clear Eyes Natural Tears. Just make sure that whatever drops you get don’t contain an antihistamine or other allergy component.

Anyone else have this issue? What have you done about it?

 


First Rheumy Visit of 2013

Taken from Google Images

Taken from Google Images

I’m going to allow myself to have a small pity party in this post, if you don’t mind. My first visit to the doctor this year sucked. I love my doctor, don’t get me wrong. I always tell people that the man is not allowed to retire or die, because I want him to take care of me forever. I just wish he had better news for me today.

Even though I haven’t been in pain much lately, I’m showing signs of joint damage in my hands. If I place my hands on a flat surface, you can see a dip in my knuckles. Now, I’m being forced to make some pretty big decisions.

He wants to switch me to Methotrexate for a few months, then possibly to Enbrel or Humira. He told me he wanted me to put some serious thought into taking the more aggressive approach, so I have until my next appointment in May to make the call. Here’s the dilemma: if I don’t go on the new treatment and stay on the Plaquenil, my joints are going to continue to get worse. If I opt for the new treatment, however, he told me that it’s not very likely I’ll be able to have children, since none of these medications are “baby friendly,” as he calls it. Even worse, it’s possible that we’ll run out of treatment options that much sooner, meaning there won’t be anything left to help me when I’m, say, 40. I’m devastated. Mom’s a mess. My friends are speechless. My family is trying to convince me to freeze some of my eggs so I can become a mom someday.

I thought I was doing so well. As much as I don’t want to start taking chemo drugs or risk my fertility, I don’t see any other option. I need my hands. I’m a writer and, more recently, a jewelry designer. I’m 21 years old, I need to be able to go out and make a living for myself without having to depend on other people to care for me.

I’m too young for joint damage. I need some more time to think and get my emotions in check. I also need to do some research on Eastern medicine. I’ll be damned if I have to get old before my time, and I’ll swallow any amount of roots or barks to slow that process down. Meanwhile, could you send some good vibes/prayers my way? It’s been an awful, highly emotional week for me. Maybe you think I’m being over-dramatic or selfish, but I do realize there are people out there who have it worse. I have a friend with terminal cancer. I know myself, and I know eventually I’ll start looking at this situation with a positive attitude. I just need a little push to get there.


“Congratulations, you have RA”

Actually, the exact quote was, “Congratulations, your mom gave you RA.” Dr. M. wasn’t saying it to be mean or anything. Mom started crying, and while I probably should have been upset about getting a diagnosis like that, I actually felt a wave of relief. It had taken so long to get a diagnosis, and now I finally knew what I was battling.

And now, a brief history. I’ve always had problems with my joints. I had to stop running track when I was ten because my knees hurt too much. My parents took me to different doctors, but they couldn’t find anything wrong. “It’s just tendonitis,” they would say. They sent me for physical therapy, but it didn’t do much good. I tried to keep running, but the pain became too much. I decided to quit track, as much as I hate to quit anything. My knee pain went away after that. I figured I just wasn’t meant to run. I had been doing karate since the age of 4, and I continued to practice and teach it even after I quit track. Then I realized that every once in awhile, my hands would lock up. It wasn’t too painful, but it sure was uncomfortable. I would try to shake them out and just keep going.

Fast forward to age 16, the year 2008. I lost my dad to a heart attack that April.The following May, I would have these episodes where I was in a ton of pain, unable to walk or even move. I was falling asleep in class, and would come home and fall asleep without doing my homework. My GPA went from a 3.8 to a 3.0. Concerned, my mom brought me to a GP that my aunt recommended. She tested me for Lupus, but the results came back negative. “You recently lost your dad. Sometimes depression debilitates people. Do you want to try antidepressants?” I nodded. I was depressed, so I figured anything was worth a shot.

That following Summer, I was sleeping close to 18 hours every day. Mom would scream at me to stop being lazy. I wasn’t being lazy though; I just didn’t have the energy. I stopped going out with friends or attending family functions. I just didn’t want to deal with people or pretend to be cheerful. This pattern continued on and off for the next three years.

In December 2010, I got together with my boyfriend, Avi. I was (and still am) happier than I’ve ever been in my life. My condition seemed to be improving. We’ve been an active couple from the start, going on road trips and exploring stuff. Avi is an avid hiker, and wanted to share that experience with me. I bought my hiking boots and was ready to go. Imagine how frustrating it was when I’d make it halfway up a mountain and then feel like collapsing because I was so weak. All I wanted to do was sleep. It was no longer an on-and-off pattern like it had been; now I was tired 24/7. My joints hurt like hell. I couldn’t type anymore, I couldn’t lift my arms, and walking was unbearable. I couldn’t pursue my fiction writing anymore, and I started calling out of work more frequently. I was getting C’s in almost all of my college classes, dropping my GPA down to a 2.7. I was angry, sad, and most importantly, my quality of life was suffering. Avi felt helpless too. He tried to do whatever he could to make me comfortable.

I started getting sick more often too. I had 4 various infections within 2 months time. I was nauseous all the time. I was having problems with my eye sight. The list goes on. I cried every night, telling Avi he should just break up with me so he didn’t have to worry about taking care of me. “No. I’m not leaving you because you’re sick.”

More doctors. No diagnosis. By November 2011, we were desperate and I was at my breaking point. Mom made an appointment with Dr. M, a Rheumatologist. He felt my joints and said they looked inflamed. He had 4 vials of blood and a stack of x-rays taken. I told myself that if he told me there was nothing wrong with me, I was going to have a fit in his office. Two weeks later, I went for my follow-up visit. That’s when I found out I had Rheumatoid Arthritis, just like my mom. She blamed herself. I told her I didn’t blame her, so she shouldn’t feel guilty. As long as I wasn’t fighting a battle against an invisible enemy, I’d be okay.


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