Thursday, May 20, 2010

A Quick Question to Ponder While I Work on a Longer Post...

I "contracted" (I never know what word to say...devloped? caught? was given as a gift?) RA when I was very young. I was 29 years old. Actually, when I look back, the symptoms began 2 weeks after my 28th birthday, but it took until the middle of my 29th year to receive a diagnosis. Life was not as hard then as it would get...but somehow I thought it was then.

When I turned 30, I eloped and got pregnant within the first month of that year! After the birth of my son, the RA that went into remission with pregnancy returned with a vengeance. It progressed somehow with his birth, and progressed again last year, at year 5. (That second part is not related, but just a caution.) In any case, I often think God knew what he was doing when he sent my son that year. It was clearly going to be harder for me to care for a baby after that year.

Nevertheless, we tried anyway. Each time I would go off the meds. to get pregnant, I would literally be unable to walk within a short time, 2 months to be exact. Though the last time, it was probably only one month. At one point, we came off Orencia, the only drug that ever worked for me - after 11 months. It never worked again. And no drug has since in these two years. Talk about regret! Eventually, I decided that God had different plans for us, perhaps adoption, perhaps a busy career...it has not been revealed to me yet. ;)

But here is the problem, and wherein lies my quesstion (that was not so quick as I thought it would be): I often get asked if/when I will have another child. It is obvious to people who know us that I'm in my 30's. Certainly time is running out. I used to answer that I didn't know. Now I can honestly answer that "No. There will not be another one."

I can clearly tell that this answer bothers most people. So often, I would explain that I had RA, and that it was too difficult for me to stop my meds., so we really couldn't afford to try anymore.

Then, it becomes obvious that they are pitying me!

So here's the question: Do I allow people to judge me harshly, unfairly, or do I open myself up to their pity? Which is worse?

I'm hoping you guys can help.

29 comments:

  1. For my own situation, which is somewhat different than yours in that I've never had any children, I feel like the initial "No" doesn't really need further explanation for most people who ask. Let them judge if they so choose. Because if they are "judgers" - then I most likely really don't give a flying flip what they think.

    Now, for people who are close to you, perhaps you would share what you've shared with us. And in that case, I would accept their sympathy or empathy (which sometimes comes across as "pity"). I guess I don't see why that's a bad thing, per say. It was probably tough for you to come to this conclusion, and those close to you feel sympathetic to your plight. I know I'm not that "close" to you, really, but I know some of your story and I do empathize with your situation.

    On a somewhat related tangent - WTH is up with people asking near strangers if/when they're going to have kids? Why is this acceptable? I don't go around asking people when they're going to STOP having kids (though in some cases I would like to!!) or when they're going to lose weight - or anything else that's personal like that. It's just rude, IMO.

    Hang in there sweetie. I hope your days get a little brighter soon. **hugs**

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  2. Thanks Amber! You know, you make a really good point, actually several. LOL.

    And you know, b/c we got pregnant so early, I didn't have any initial pressure, though I obviously get it now. It is really rude. What if one of us was infertile? Sometimes I really wanna say, "We won't. The dr. had to remove my uterus." just so I can see them fall over themselves to apologize!

    Its sorta like the time my sister, whose son is autistic, took a lecture from a Mom for like 10 minutes at the park all about how her son threw dirt when he was 3. After apologizing profusely, my sister finally said. "He's autistic." The woman felt completely horrible! But she made a point like mine now. Why should we even have to go there with strangers???

    And, btw, obviously God didn't take my uterus. Or yours. But you know, it would shut them up!!!

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  3. I never wanted kids, which makes it a bit easier for me that I can't have them I guess. It's easy for me because I don't have to think about quitting medication and such.
    I don't have anything against children, I don't hate them and I don't even have that 'I'd hate to have them' feeling. I just completely lack the desire to get pregnant and give birth.

    And yet, people pity and judge me for not wanting kids, and also for not being able to have them due to my medication and bad genes (I'd have to get pregnant through IVF, basically). I've had people *urge* me to get pregnant because they heard that RA goes away when you're pregnant! (a point I really don't get, as I believe one should have children because one wants children, not to get rid of RA-symptoms for crying out loud...)

    The whole pity / judgment thing gets to me, even if I get pitied and judged for different reasons. I try and ignore it and say what I want to say about it as casual as possible and not leave much room to talk about it. My choices and their consequences are not open for discussion in this matter, and though I try to be nice about it, I don't want to discuss the reasons why and how most of the time, so I keep it short. Sometimes I'll even say that that's all I have to say about it, and then change the subject.

    Whatever you do, keep in mind that they are the ones judging (which says enough about them) and they are the one pitying you. You cannot control what other people think and feel about something and you don't 'allow' them to judge you, they just do. You can choose (and try ;) ) to not let it bother you too much.

    It's hard, I know. And it's only natural for you to be bothered by something so close to your heart.

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  4. Maybe you should just say both you and your husband are gay ...maybe that will shut them up ;) It's funny...I'm a single mom and people ask me when I'm gonna have another kid. My daughter is 12. yeah, there is modern science and I could have one if I wanted but is that reasonable? noooooo! Not unless I'm a rich celebrity which I am not. I think if they don't understand when you tell them you have RA then they are nutso. But, also you don't owe them an explanation. It isn't their body or their lives. There is a country song that pretty much sums it up: "God is great, beer is good, and people are crazy"

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  5. I must clarify: Having RA does not mean you shouldn't have kids...but if your RA isn't under good control then it would be harder. Of course, all of us "look good" so how are they to know how we really feel? If we were to have cancer though they would think it was crazy to have more kids. RA is so misunderstood.

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  6. I agree, Leslie! Good for you for being a single Mom. You are a stronger woman than I!!! :)

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  7. It is really none of anyones business whether you choose to have more. After my daughter was born I couldn't have anymore due to meds & RA so we adopted 2 boys in 1996, I had RA for 12 years at the point - the comment I received and it still ticks me off when I think about is - Don't you think you are enough of a burden on your husband? Our first social worker wouldn't approve us because her grandma had RA.

    When they ask if you are going to have more children just say, "Why? We got it right the first time - my sons perfect" lol

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  8. Cindy,

    That is INSANE that someone made that comment, but my parents got close once. I was considering adopting a "little person" child, but my husband felt strongly that it wasn't the right time. My parents DID say that we had enough medical bills. That part was true, but that wasn't what I considered when I thought about things. I can't believe people say that. My husband continually says that he wouldn't trade me for the world. I'm sure your hubby feels the same way. And good for you that you adopted two boys. How wonderful!

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  9. Tanja,

    You made a lot of great points too. And as much as I love my son and wouldn't trade him for the world, there was a LOT I loved about being single and unencumbered (sp? lol).

    I almost didn't post this b/c I knew it wasn't very entertaining, but I'm glad I did. I have learned more than I have with most of my posts!

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  11. Wow SB i'm dealing with the same thought process...hubby and i were trying to get prego, we haven't had any children do to fertility issues and my RA getting worst we had to stop trying and i started focusing on trying to get "healthy". I hate the dreaded question any kids, and then what are you waiting for. I really just shrug my shoulders as i really feel like its no ones business what goes on in my bedroom lol. I don't try to broadcast our issues and i'm perfectly happy with my life just the 2 of us and our furry kids why do i have to have kids because i'm married it makes no sense!
    Anyway i really don't know what i'm going to say now that we've stopped trying and know that as of right now we can't and thats ok but igorant people just don't understand!

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  12. I understand what you gals mean, I am 43 and have no children, I've had RA for 26 years, I was married and we tried for many years, but when we were tested it was him and not me that had the "problem", to make a long story short, we ended up divorced. As time went on and so did my "biological clock", and of course the RA, it was just not going to happen for me. I wanted children so bad. People still ask me, why didn't you ever have kids???? I want to scream!!!!!!!!!!! I know that having kids or not having kids does not define who I am, my family and friends love me for who I am :) I am happy to say that I am engaged to a wonderful man who loves me for who I am, RA and all!!!

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  13. I have one child, didn't have another for other medical reasons, then RA pretty much locked that door shut. When asked now, I smile and say "Nope, just the one for us." and I think to myself you stupid selfish bitch, shut up. It makes the smile come so much easier. This probably isn't the most helpful answer, but it works for me.

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  14. Elaine that is a total blessing, having a hubby that loves you the way you are, RA or no RA. I wouldn't trade mine for his weight in diamonds. I think you two will find a wonderful life together!

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  15. "So here's the question: Do I allow people to judge me harshly, unfairly, or do I open myself up to their pity? Which is worse?"

    You tell them the truth. You tell them about the RA. You tell them how happy you are with your son, and how you and he and your husband are a warm and happy family, and how you're content with the way things are.

    And then you ignore their judgement, which has nothing to do with you, really. If they're harsh, you ignore it. If they're unfair, you ignore it. If they pity you -- and they say so -- tell them to save it for someone who needs it. You're living your life in the best way you possibly can. Not having more children isn't failure, it's just how it is. And you can give all your love to the child you have and to your husband. What in the world could be wrong with that?

    Full disclosure: I'm the mother of a single child. When I got rheuma ("got" works easiest, I think...) she was already around six years old, and I couldn't even imagine trying to deal with an infant while coping with the disease. It was hard enough with one small child. So don't, please, ever feel bad about your decision not to have another. You're a good mother, and your son has all your love. It's enough. :o)
    -Wren

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  16. I'm 48 and therefore come at this from a different perpective I know. I was told early on from several doctors that I would never have children and then ended up with two without any medical intervention! That being said, who cares whether people pity or judge you. They don't understand this disease. They are ignorant of the facts of life that are uniquely yours. Screw them. I would find myself a few zinger comebacks and let that be that. You live in the light of your truth and don't mistake their darkness for shade!

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  17. Jessie - You and your hubby are VERY lucky to have each other and your dogs. :) I am positive God has a great plan for you!!!

    Elaine - I need to have you tell us more about how you have lived with this disease for 26 YEARS!!! You are a hero indeed. I'm sure you are a blessing to your friends and family. Many times women without children make the best friends in the world b/c they have more time to devote to we people who need you! Congrats on your upcoming marriage.

    Margaret-You crack me up... You remind me of myself. LOL.

    And Wren- Of course, you would have written with true wisdom as always. You are so right. The truth is that my son, and of course my husband, fill my heart to completion. Somtimes, I think other mothers suspect that and they think I'm selfish for depriving my son just b/c I am content. But in all honesty, we did try to do that for him, and perhaps that is why it didn't happen, b/c even though I'm sure I would love another child just as much, it is probably not the best plan to have another child to give the first one a sibling.

    In any case, I will certainly remember your advice, and everyone's next time this happens. I just hope my son will understand when he is a bit older. Right now he is very jealous of his friends whom all have siblings. I assure him that if he DID have a sibling, he'd probably be as frustrated with them as his friends. ;)

    I think it is also fascinating that women with RA seem to have the best husbands. That can't be a coincidence? Or maybe it is just that we appreciate them more b/c they have walked with us to hell and back and back to hell again?

    But again, thanks to everyone. I feel like we may all be a bit stronger when confronted with rude, prying people whom want to criticize our lives.

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  18. Lettyann, How very true indeed!!!

    You know, my Dr. has 2 kids, and she always encouraged me to have another one. But last time I saw her, I took my son with me, and she remarked several times that she couldn't believe how well behaved he was, nor how close our bond. I think even she recognizes that sometimes one child is the way to go.

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  19. 2 More things:

    Elaine - I saw your bf on FB! He's cute. :)

    Leslie- We need to find you a great hubby too!!! You deserve only the best!

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  20. I would love to share with you all!! Thanks Super, I think he's cute too and a definite keeper :)

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  21. I like Margaret's answer! :-D

    We have been wrestling with the question of whether or not to have a second child... right now we are planning to try, but haven't actually started yet. I've discovered that no matter what I do, I can't win! If I say we are thinking of having another, people judge me because I'm sick - "is that a good idea? Is that fair to your husband and first kid?" If I say we're considering NOT trying, people judge me for that too, or pity me, or other fun things like that. If we do try and end up not able to have a second child (and there's a pretty decent chance of that happening, especially since we're not going to take any extra measures to have one), I know it's going to be even tougher to deal with when people ask those questions. It's already tough, just because of the uncertainty, and the doubts we're having.

    I don't have a good answer for you about how to handle it, but I wish people would mind their own damn business!

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  22. So I was diagnosed with RA @25 - as I look back it probably started in HS - but we didn't know. I am 41, and married 13 years to a true prince of a man. So 16 years of RA, 13 years of marriage, 2 cats, 2 dogs, and no babies.

    This was a really hard road for me. I decided early on having a family was really important to me...actually years prior to meeting my husband. He is a adult survivor of a horrific childhood - and wasn't as interested in kids when we first got married...having met (2x) his "family" ...I could see his concerns.

    My doctor really intervened and met with my husband and I - I was on nsaids, and weekly doses of pred (when I wasn't ovulating -sp?), but not of the "good" stuff...heck the biologics weren't even out yet...but my RA has never been in remission...not once in 16 years...my blood work always shows the diesease as active...we set a date to get pregnant by and if it didn't happen, it didn't happen - that was 4 years ago on our anniversary - I wanted to bind the date with something symbolic and heartfelt - at the time we had 2 cats and one snuggable Bishon - she was a Daddy's dog, and I made my husband commit that if we didn't have a bun in the oven, he would get me a fluffy dog of my own...we now have a 4 year old, 8 pounds of fury and fluff...and she is all mine - spoiled rotten...and terribly behaved.
    When people as about having kids - I usually just say no, or we couldn't - we ceretainly tried...hey 13 years no birth control - either it is God's plan or it isn't...I haven't ever thought that much about what they thought about me after I said we didn't. I know I can be quick to judge people who can see to pro-create like the proverbial rabbits - but I am sure there is/was a purpose to our genes not meeting together to create a little one...we are meant for something else, maybe greater, maybe lesser, but ceretainly different.
    If I find them particularly rude my husband will say we are still looking for someone to run the videocamera for the "creation" videos of our yet to be born...I told you he is a keeper!!!

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  23. He sounds like a keeper, for sure. :) Both of you do!!!

    And Remicade Dream - May you get blessed 1000 times over and then run over here to tell us when you are, in fact, "knocked up." ;)

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  24. SB...no way do I want a husband! I'm glad you found a good one, but there aren't many out there like that. In my experience, most men I meet wanna be taken care of....I am NOT doing that! lol.. I like "me" time and control over my remote control! lol

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  25. I gotcha. I just think tat someone super fabulous deserves a si[fabulous too! But I'll but out ONLY until I meet George CLooney with a heart of Gold,and then I am passing on your email, and you can't stop me. Muah. xoxo

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  26. Hello,

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  27. Great post! Only one thing I most kindly wish to disagree with... I have the best HUSBAND. I can't even stand to think about going down the road of RA without him! People just do not stop to think before they open thier mouths. This whole getting gifted with RA, has made me think more before opening my mouth.

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  28. So here's the question: Do I allow people to judge me harshly, unfairly, or do I open myself up to their pity? Which is worse?

    SB - Some people don't really want to know; they're just making small talk and don't realize all the emotions surrounding such a question. Those people don't realize they're being rude and are pretty easy to distract. I assume your issue is with those nosy individuals who truly want to know and have the delusion that it's okay to pry into your personal life. A variety of replies can work:

    *Didn't your parents teach you that it's rude to ask such a personal question?
    *Are you just being nosy, or is there some purpose to your question?
    *That's kinda personal, don't you think?
    *Why did you need to know?
    *Are you asking out of idle curiosity, or do you really want to discuss my private medical issues?

    There's no understanding what makes people tick. I have five kids and people ask me if we plan to have a sixth. Depending on the person, I've been known to reply that we didn't even plan to have a fifth! That usually makes them realize how inappropriate their question was ;)

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  29. Many factors go into the decision to have another child or not. If you have RA, one of the factors is the medication you take. I wanted to let everyone know that there are experts available to answer your questions about the safety of RA medications during pregnancy by calling OTIS as 877-311-8972 (toll free in the US and Canada). You will speak with a phone counselor who is trained in teratology (the study of birth defects caused by exposures during prenancy). This service is free and confidential. OTIS counselors have a variety of backgrounds in the health care field, including doctors, genetic counselors, nurses, and researchers. You can also check out their website at www.otispregnancy.org. Under resources, you will find information on Crohn's disease during pregnancy and even fact sheets in English and Spanish on a variety of common pregnancy questions like topical acne creams, caffeine, nausea and vomiting, and depression, as well as some prescription and non-prescription medications.

    In addition to providing updated and accurate information on medicines during pregnancy, OTIS conducts telephone interviews with willing participants to learn more about health conditions and medicines during pregnancy. This increased knowledge should benefit women and their doctors in the future by aiding in treatment decisions and ideally providing reassusance. One project, the OTIS Autoimmune Diseases Pregnancy Project is researching the effects of autoimmune diseases, such as Crohn's disease, rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis and psoriasis, as well as the medications used to treat these conditions during pregnancy. Participants will not be asked to take or stop takign any meidcation as part of this study. We are enrolling a comparison group for this study (women who do not have an autoimmune disease, but who are pregnant). If you are interested in learning more about this study, please call 1-877-311-8972 (Toll free in Canada and the US), email raandpregnancy@ucsd.edu or check out the website at www.otispregnancy.org

    OTIS Counselor

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