Comments for Chronic Twenties

Comment on Aging with Chronic Illness by S

Mon, 26 Sep 2011 21:45:27 +0000

Danielle, I have heard of this, remission through pregnancy. Probably not a great reason to have babies at this moment in my life, but it is encouraging. Thank you for sharing your experience.

I have to say, that despite my birthday freak out, I feel at peace with the disease right now. You just do the best you can every day. Even if it’s not what you want…

Comment on Aging with Chronic Illness by Danielle

Danielle — Fri, 16 Sep 2011 13:51:56 +0000

I’m 23 and was diagnosed with RA at age 15. Even though I’ve been diagnosed for 8 years now, it’s just now catching up to me. I had a lot of symtoms early on but decided to go on a Naproxen regiment instead of Methotrexate (the thought of “low dose chemo” really freaked my mom out). I became pregnant at age 18, had a baby girl, and then a son 14 months later! During both pregnancies and one year after the birth of my son, I had no symtoms. My Dr. said that it’s common for RA to go into remission during pregnancy. Now the symtoms are back and worse then ever. I’m starting on Methotrxate this weekend and NOT looking forward to it. Anyway- the point of my story is that you shouldnt feel the need to rush having kids, who knows you may be in remission for those tough years. Regardless, having kids and RA will never be easy- 20 or 40.

Comment on Illness Naratives & Chronic Twenties by laura

laura — Wed, 13 Jul 2011 16:24:10 +0000

It is so great to find other 20 something with RA. I am 23 and just starting to find out about mine. I want to know as much as possible.
This line “if I decide to pursue a degree in archaeology, I often wonder if I’ll physically be capable of participating in excavations by the time I’d be through with my Ph.D.).” really speaks to me. I am a graduate student in psychology and I wonder if I will be able to continue to type and do experiments when I am through with my Ph.D.

I wish more people knew how bad it is and I plan on educating as many peolpe as I can.
Thanks for this.

Comment on The Difference a Year and a Half Makes by S

Mon, 25 Apr 2011 20:36:40 +0000

I’m going to hold you to that. So while you’re making promises, can I see a schedule of publication please?

Seriously though, welcome back sister. And I’m excited to hear you talk about your path to healing.

Your chronic sister,
~S

Comment on So You Say I’m in Remission by S

Thu, 24 Mar 2011 18:21:08 +0000

Meg - I have to say that I’m as grateful as your comments as you seem to be for my replies. I haven’t been writing on this blog as much lately in part because it had linked me to this tremendous burden in a way that I’m not always comfortable with. That said, your most recent comment just prompted me to write a full post about inflammation awareness and judgement. I hope you’ll find it helpful. It took me a long time to be able to listen to my body’s inflammation as anything but agitation and a nuisance, and I’m still working at it.

It sounds like you may need to make some lifestyle shifts to support your physical self better. But I know that can be a scary proposition. It’s part of the reason I still haven’t pursued a degree in Near Eastern archaeology — I don’t know what my body would do on a field excavation these days…

Comment on So You Say I’m in Remission by Meg K

Meg K — Wed, 23 Mar 2011 00:19:33 +0000

I also work at a restaurant, so I’m continuously on my feet lifting and carrying heavy things. I can’t work 20 hours in 2 days (the weekend) without wanting to fall apart. A lot of the work at the restaurant is teamwork, so we all have to help each other and pull our weight. When people my age complain of pain I literally laugh out loud because they don’t understand. For me to admit that I’m in pain it takes a lot out of me and my pride, but when I do say “I can’t lift that bus bin” (full of aprx 30 plates), I don’t dare to tell them why. The one time I tried I got a “give me a break” response.

I’m an optimist as well as spiritual, but lately it has gotten so hard to not let my RA mentally and emotionally overpower me. I can’t stop feeling it, thinking about it, and let it control daily choices I make (i.e. to rest or not to rest). I know that stress is a big factor for inflammation, so how can I keep telling myself I’m healthy when my body says otherwise?

PS- thanks for your responses, they’re good for me

Comment on Aging with Chronic Illness by S

Thu, 17 Mar 2011 02:33:31 +0000

Meg, I totally hear you. I went into my rheumatologist’s office last summer really pissed and agitated. I think it was a little after I wrote this birthday post actually… You see, I get cold sores. If a person is a carrier of that disease (it’s technically herpes), they may get two or three a year, max. Because of my RA meds, I would get one, and before it could heal completely, I’d get another one. My fella doesn’t want to kiss me (understandably) when I have an active cold sore, and I’d have to actually come off one of my RA meds to make the cycle stop. It’s infuriating to be choosing the lessor of two shitty options. And even more frustrating when it doesn’t completely fix the problem anyway.

The majority of RA meds work by suppressing your immune system–I know my doctor told me that when I went on them, but I don’t think the implications of that were fully explained. Frankly, I don’t believe these drugs we’re taking have been along long enough for doctor’s to know if it’s safe for people our age (people who intend to live for another 40 - 50 years). But that’s a separate blog post. The point is that the meds actually reduce your body’s natural ability to fight infection. Specifically, the reason we’re not supposed to drink is that most of these immuno-suppressants compromise the liver, the part of your body responsible for removing toxins from the blood.

I’m glad you told the doctor who called you a drunk to take a hike. The last thing you need is a judgmental, and very likely hypocritical, man telling you how to handle your body. Instead, it may be more helpful to figure out what does make your body tick and swell up. The more I learn, the more I understand that I can regulate a lot of this disease with my diet and physical movement. But it takes a whole lot of awareness.

Comment on So You Say I’m in Remission by S

Thu, 17 Mar 2011 02:18:01 +0000

This is something I struggle with all the time.

As a yoga teacher, I do believe that pain is a contraindication. Pain is your body laying down the ground rules and saying no.

But there’s an element of interpersonal practicality with children, especially small ones. While I think you could potentially explain the pain to a first grader, and maybe even see a little empathy and understanding (kids get a lot more than we give them credit for), unless you are able to give impeccable verbal cues that a youngster can understand and has the motor skills to execute, you’re probably going to end up tying those shoes yourself.

It gets very crappy when you’re telling yourself to just suck it up and do what you gotta do though. Let yourself feel it, even though it just might hurt (a little or a lot), and do it anyway.

You have to acknowledge the pain. But then acknowledge yourself for doing what needed to be done, for doing the best you could in the moment (especially when it’s not perfect or ideal).

Comment on So You Say I’m in Remission by Meg K

Meg K — Wed, 16 Mar 2011 02:00:56 +0000

Among my various jobs, I work with kids. Today at work we were outside on the playground with the kids. I asked a student to tie his shoe, but realized he was in 1st grade and didn’t know how to yet, so he asked me to tie it for him. This time of year in NY it’s still pretty chilly outside and only being on Naproxen at the moment, I realized that a task so simple as tying a shoe was going to be painful. How can I explain to these kids why I’m limited to certain tasks? Should I even bother or fight through the pain?

Comment on Aging with Chronic Illness by Meg K

Meg K — Wed, 16 Mar 2011 01:54:01 +0000

This blog made me cry because I had a similar experience. I’ve had symptoms of RA for 2 yrs now and finally got diagnosed.

Before the holidays my rheumatologist put me on medicine where I could have ONLY 1 alcoholic beverage per week AFTER I told him that I’m 22 and I’m going to enjoy the holidays. He put me on medicine, which I found out 2 weeks into it that it specifically says NO ALCOHOL… why would my doctor put me on medicine like that when I specifically told him not to??

At my next appointment I complained to him about it along with my other questions and concerns about what RA is and what’s going on with my body. I stopped going to him because he was a jerk… later on my primary care physician read the notes where he called me an alcoholic due to my complaint!

It’s frustrating when I’m YOUNG and no one understands that I need someone to explain what exactly is going on with my body. I’m used to living an active and social life, but I have yet to get answers. Anyway, these blogs and this site have been the most helpful out of anything since it seems that all the RA info is directed toward old age. Finally, a support system that understands what it’s like to be young with RA. Thank you.