Aging with Chronic Illness
It’s my birthday. Yes, there is going to be much celebrating. Yes, there will be cake, and yoga, and Ethiopian food and all the other things I love (including my fabulously supportive fella D).
However, in the back of my mind, I’m always concerned about what comes next. I was diagnosed a little over four years ago — timing I’ll never forget because the doc told me that I’d need to be on meds that I wouldn’t be allowed to consume alcohol on… Not something you want to hear right before your 21st birthday.
In any case, what I’m really concerned about are these future kids I want to have. I told myself I’d have them early; I set this year in time as an initial and slightly unrealistic benchmark for myself… I always wanted to have kids early. And the RA was another reason to do that–as I get older, I suspect it’ll get harder for me to chase them around, get up in the middle of the night to tend to them, etc. That would be the case for anyone, but I know there’s a good chance I’ll be in pain.
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I’ve never felt that fear before. When I was younger I used to relish the thought of getting older, being on my own, taking care of myself. Now, painfully aware of my own internal tick tocking, I know I’m living a good life. I know I have everything I could ask for in my life.
And still, tick, tock, tick, tock…
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.
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.
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.
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…