Wednesday, July 25, 2007

Hopeful and Positive

I am very close to delivering my fourth child – a baby girl who in all tests and ultrasounds has proved to be healthy and developing well. I am excited and not unaware of how very fortunate I am. I know autoimmune diseases can make conception and pregnancy challenging. I also know that being fearful of potentially negative outcomes can make pregnancy – and parenthood, for that matter – equally challenging.

I received a comment to one of my recent blog posts that said, "I truly do not comprehend why a woman would choose to give birth or raise children when she knows she has arthritis, a lifelong chronic disabling disease. It baffles me, and I wonder WHY as well as HOW one plans to physically be available for a baby, then a toddler, and then a youngster, etc."

Frankly, I was shocked at that one, and I'm sure many you will be, too. (I look forward to reading your comments!) The quick and simple answer to that comment is that I have hope and a positive attitude. Working here at the Arthritis Foundation, I hear about and see people who range from mildly affected to severely affected. I know what they go through and how they cope. I also know they never give up – and neither do I. To prepare each issue of Arthritis Today and write or edit each article, I continually read about the research going on in the field of arthritis. I know what's being studied, and I talk to those doing the studies. I know geneticists are very close to finding all of the genes involved in autoimmunity. I know tissue engineers are on track to growing cartilage for transplantation into bad joints. I know researchers keep finding markers of inflammation that can be potential targets for new medications. Because of all of that, I have hope that with continued research, treatment of arthritis will improve dramatically in coming years. I know that although it is lifelong and chronic, it does not have to be disabling.

I know treatment certainly has improved since my own grandmother was physically disabled back in the 60s. Being told to stay in bed to take pressure off her joints and being injected with gold didn't do much to help her RA improve. Her body weakened, and she died in her mid-50s with eroded joints and a damaged heart and lungs. When I'm in my mid-50s, I know for a fact I will be in much better health. Rheumatologists have learned alot since then, and I follow my rheumatologist's advice. I eat right. I exercise. I don't smoke. I drink alcohol, when not pregnant, in moderation – maybe one glass of red wine at night and maybe two on a weekend night with friends. I take my medications as directed. I make sleep a priority. I take time -- if only a few minutes when I get home from work or before I go to bed -- to relax. I have a great relationship with my husband, kids, mom, sister and extended family. I have supportive coworkers and friends. I have hobbies. I'm involved in my community. I enjoy life. And because of all that, I never questioned having kids or raising them. I have alot to offer society, and a chronic disease doesn't change that.

I think my three other children would say that I've always been available to them – both physically and emotionally. I had all three of them before being diagnosed with RA, but slowly and surely, the symptoms were making themselves known throughout the past decade. Still, I play ball with them; we walk, bike or swim together; my oldest son and I workout at the gym together, and my younger two can't wait until they're old enough to join us. We talk about anything and everything under the sun. We laugh – alot. We draw pictures, play cards and games, build with Legos or pretend with dolls. We watch movies, go miniature golfing, hike and camp. I help with homework and school projects. All three kids are involved in sports, and my husband coaches one of the teams. We're always at practices or games. Afterward, some nights we go home and cook together. Other nights, we run errands and get takeout. On weekends, we put on music and clean the house; during the week, the kids help out with chores after school so I can spend time with them all at night. My husband works from home full time, so he does the laundry. Our life is full and busy, but it works. We all make it work. And therefore, my having a chronic condition does not preclude both my husband and I from having a family and a full, happy life. I can't – and don't – imagine it any other way. And I truly believe that in life you get what you give. If I thought I could do nothing more than sit on the couch or take to my bed, I would be completely unhappy. If I get up, feel productive at work, contribute to society, engage in helping others and take care of my body, life gives alot back to me. Yes, I have a chronic disease, but I also am able to live. And that's the ultimate "why" and "how" for being available to my children, regardless of their age.

This fourth child coming in a matter of days or weeks will be delivered from my 41-year-old body that has been diagnosed with RA. I don't feel any different than I did when I delivered my last child 8 years ago. Actually, I feel better. Honestly. I feel stronger and healthier now. Perhaps it's because my diagnosis made me make my health a priority. When I got pregnant, my level of inflammation was down, I was exercising regularly, counting calories to keep my weight down and taking time to rest. Eight years ago, I knew my wrists hurt when I held my babies, but I was told I had tendinitis and that carpal tunnel syndrome was common in moms with young children who are constantly picking up kids or car seats. I knew my hips hurt, but was told it was because I held the kids on the same side and threw my back out of alignment. I knew my ankles hurt, but was told I sprained them. My doctor, although he knew my family history included RA, never tested me. I very well could have had RA back then, but didn't know it. So this time around, I'm ahead of the game. I know what I need to do now to keep the inflammation down. I'll go back on my DMARD after delivering the baby and nursing for a few weeks. I'll be coming back to work. I'll continue to be involved with my family, friends and community. I'll continue to take care of myself. And I'll still be happy and hopeful that I'll be controlling my arthritis. It will not control me or my decisions about how to live my life.

8 Comments:

At 5:35 PM, Anonymous Anonymous said...

My grandmother had rheumatoid arthritis. It left her hands frozen in a half-gripping position, but she continued to work for years. And I mean she ran an office for a business by herself. Arthritis can be difficult, but you find ways to work around and with it. You just have to be determined.

 
At 5:24 PM, Blogger Unknown said...

CONGRATS! GO AHEAD!
I'm crying while writing since I'm also suffering RA.
I'm 32, I've a degree in Business Administration and when I received the confirmation I had RA I've decided to start the carrer I've always wanted: MEDICINE
Now I'm in my 2nd year, and also planning to became a mother in one year or two.
I'm investigating on therapies, I'm determined to get cured, if you are wanna contact me I'll keek updated on this.
BEST REGARDS!

 
At 12:26 AM, Blogger Britt said...

Dear Author,
I am a twenty year old college student, and have had RA since i learned how to walk. I have viewed the arthritis fond. page before, but previously never saw your blogs. I read the first blog entry about your expecting, and congrats by the way; it already sounds like your a pro at being a great mom. However, once I read the first I continued to read, and the things you wrote gave me something back that I haven't felt in a while and that is hope. I to am a Biology major, and it is amazing to find that their are others like me going through school as well. I am on my fourth surgery for a degenerative joint in my knee, and I must admit going back to school with limitations has been more than a little trying.I am the only woman in the program walks a little different than the rest, and its comforting to know that their has been some one as determined as me in the past, and whose life seems absolutely amazing. Anyway, sorry for the long winded story I just wanted to say thank you for making my day, and bringing a little needed hope back into mind.

 
At 12:16 PM, Anonymous Anonymous said...

I say "congrats" to you for not letting RA limit your capabilities. I too have RA diagnosed at age 10 and I have never let it win. I had two beautiful, healthy children who are now 14 and 19, and I am so glad I took the chance to have them. The key is knowing your body and your disease, and working around things. You may have to do things a little or alot differently than the healthy individual, but there are always ways to have a positive outcome. Good luck with your new baby and always, as you have already done, keep that positive attitude!

 
At 12:54 PM, Anonymous Anonymous said...

Dear Donna,
It was great to find your blog. I'm 56 and was diagnosed 3 years ago. I have one grown-up daughter. My grandmother (and my aunt, and now my cousin and I) all have RA. I'm told I look about 35 which of course makes people think that there really can't be much wrong with me, and sometimes I feel so much like a wimp! If I had a dollar for everyone who sees my current wrist splint and says "Carpal tunnel?" I'd be rich! I would like to start a personal "Arthritis Awareness" day. There is no arthritis support group around here, and the occasions when I can talk to another person with RA are golden! Even the person in the area who runs occasional RA Self-help seminars hasn't responded really well. (I haven't actually met her but emailed her asking if we could meet, and she said she'd love to, but the next round of follow-up she didn't respond, so I think she's just too busy, and who wants to bug someone?)
Like so many people with RA, I was told at first I just had fibromyalgia ("Just"...) My doctor thought my birthdate in the records couldn't be right (it was) and that I was "too young" to be having all the problems I did - chronic tendinitis in one ankle, fixed with an orthotic, followed by problems in the other ankle (I wear and AFO), shoulder tendinitis, muscle spasms in my neck, back and jaw, wrist pain...The diagnosis of RA was a surprise to him, but not to me, with the family history.
Well, please keep writing - maybe I'll learn to blog soon! My daughter is great at this stuff, I'll have to ask her to get me started. Writing down thoughts is SO HELPFUL (oops, I've gotten away from journaling over the summer, which I also find helpful.
peace & health - shalom
Ellen

 
At 2:37 PM, Blogger Unknown said...

Hi...Someone once told me a baby is god's way of saying the world should go on. And so should we. I thank you for sharing your experience and wish you the best of luck with your new little one. I'd rather be recovering from a birth than from this fusion surgery on my ankle. I have degenrative joint disease and two titanium hips already and have had about 8 other foot and knee surgeries to deal with my arthritis. I was having a pity party by myself and I knew reading this blog would help me get my perspective and feel better. It has. God bless you and AT and others who remind me I can't give up and we all have so much to live for. I often wonder how I'm gonna be there for my sons in college and high school now and my husband. I hate being laid up but this one is gonna take a few months! These next three weeks will be the worst but I'm gonna hang in there anyway. Ok, I gotta go lay down again and hope to hear if the baby is a girl or boy when I check back here again. With kind regards.

 
At 1:26 PM, Blogger LMB said...

Wow, you are so inspiring! Thank you for all your great words and message of hope.

 
At 7:58 PM, Anonymous Anonymous said...

I think it's great you have a positive outlook. I am a highly educated professional who can't physically work full time or take care of my three children due to mixed connective tissue disease. Each pregnancy proved more difficult and I realized it selfish of me to think I should put another child at risk. Sometimes even with education, the right medication, and support from others, things don't always go so well. I live each day wondering what else arthritis will take away from me. I fight it, but sometimes you don't always win. It's disappointing to only hear from those of us doing better than others. However we should all try to have a positive and realistic outlook.

 

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