It’s getting cold too quickly.  Weather.com tells me that there’s a chance of snow this weekend.  Aside from the annoyance that we longer have seasons (it’s October, where the heck is fall?), a long period of cold is really bad news for my joints.

Rhuematoid arthritis is a condition of heighten and chronic swelling in the joints.   And I’ve found that it’s particularly sensitive to cold and elevated humidity.   With my doctor, we had worked out a cocktail of drugs that had my condition pretty well managed through the warmer summer months.   I would wake up with the ability to use my fingers and toes, less swollen, less painful.  Cold weather, especially a wet cold, completely messes up that well working chemistry system.

I didn’t need a weather report to tell me it’s getting colder.  When I wake up, I’m swollen for longer.  I linger in bed because the balls of my feet hurt.  Even right now, I can’t close my hands into a full first.  Even if the swelling wasn’t painful, it’d still be causing lasting damage to my joints.

Damn the cold I say.   Every year I tell myself I’ll move somewhere warmer.  Eventually, and despite the things that keep me here, I think I’ll have to preserve my joints.

Since I was diagnosed with RA, I’ve tried all sorts of drugs and remedies.

At the time of my diagnosis, the rheumatologist I was seeing recommended putting me on a very high dosage of steroids and a drug that I wouldn’t be allowed to drink alcohol while taking (methatrexate).  Obviously health always comes first, but I got the news about my RA just weeks before my 21st birthday.  I resisted this treatment on both fronts, wanting desperately to have a normal college experience, and because a doctor friend informed me that she would only give the amount of steroids prescribed to me to someone that was dying.  Great.  Double whammy.  Not only I did this treatment require my long-term sobriety, it was also good enough to help a dying person make it through their last days.  That was precisely what I wanted to hear at almost 21.

I saw a new rheumatologist when I returned to school.  The first one was back home, across the country, and I was going to need a doctor who could manage my case on an ongoing basis.  She recommended the same treatment as the first, but we agreed to compromise.  We would start with a less severe dose of steroids and a more lifestyle friendly alternative to methatrexate.

It was fall semester of my senior year of college.  I was on a reasonibly high dosage of predinisone, and a low dosage of sulfasalizine.  I was to slowly decrease the steriods (predinisone) and slowly increase the amount of sulfasalizine.

The doctor friend of mine gave me more advice.  If at any time while taking the sulfasalizine, I experienced a rash, redness or any skin irritation, I was to stop taking the drug immediately and call a doctor or go to the hospital, as the rash would indicate that my body was going into shock.  One night, just before I was to take the GREs, I turned beet red, flush and itchy in the shower.  It was late, I was hoping for a good night sleep, and I was going into shock instead.  As it turns out, I’m allergic to sulfer (sulfa-based drugs).

You know what that meant?  No more alcohol for me…  I was put on methatrexate, after my doctor accused me of lying to get out of an exam.  (An issue I will need to return to in a future post, as the accusation comes up quite a lot when you’ve got a physical condition that doesn’t respond well to medication and people around you who don’t understand it.) In addition to the methatrexate, I was given folic acid.

The methatraxate wasn’t enough to keep the swelling down.  To avoid permanent joint damage, my doctor then put me on Enbrel, a newer RA drug that was still getting advertising play.   Enbrel makes its way to consumers in two forms, pre-filled syringes and sure-click pens.  I started with the pens, still taking methatrexate, and went looking for a new doctor.

My newest doc wanted to work me off the methatrexate.  He likes to say that it’s not a good drug for a young woman.  What he really means is that if I get pregnant while I’m on the drug, right to choose is out the window–I would have to have an abortion.  So although I was on birth control prior to my RA diagnosis, now it’s by my doctor’s mandate.

Since switching to the new doc, I’ve  switched to the pre-filled syringe, replaced the folic acid with leucovorin and also now carry a script for an antiviral.  Apparently, all these immunosuppressants make it difficult for my body to fight of cold sores…

Now, once a week, I push the contents of a pre-filled syringe into my thigh.  I take a couple of pills here and a couple of pills there.  And I try to lead a normal life.

How does it all make me feel?  I’ll get to that next time…

Hi,

M here. I just wanted to give you all a brief intro to this blog and what it is all about. S   and I are both in our twenties and we both have chronic illnesses, albeit different ones.   S has rheumatoid arthritis (RA) and I have indolent systemic mastocytosis (or masto for short). Check out the About page to learn more about each of us and all about our conditions.

S and I have been friends for a while. It wasn’t until recently that we discovered that we have this shared “issue.” And like sunlight breaking through the clouds (I love cliches), I suddenly had a friend who understood me–someone who got a part of me that no one else, not my parents, not even my best friend and roommate A, could possibly understand. Because, unless you have a chronic condition you can’t know what it is like. And unless you are twenty and have one, there is no way you can understand the physical and psychological pressure and changes it imposes on you.

Now, this isn’t going to be a woe is us blog. Quite the opposite. We decided to join forces and blog about our experiences of being in our twenties and having chronic conditions both as a way to document our lives and to reach out to other twenty-somethings (or teens, or thirty-somethings, or whomever). Both S and I are great advocates of social media and its power to transform the world we live in, and so we are embarking on a journey to do just that, to span boundaries of space and time, to use technology to capture and share our unique experiences, so that our stories can transcend our lives and touch other people.

We hope that other twenty-somethings with chronic conditions will find this blog and identify with what we are saying. We hope that they will reach out to us–that we will find community with each other. But if none of that happens, at the very least, we hope that writing this blog will help us deal, day-by-day, with the struggles of being twenty-something and having a chronic illness.

Photo Credit: Abel Baria