Thursday, December 3, 2009

Jacqueline


Jacqueline
Long Island, NY
Diagnosed with Rheumatoid Arthritis at age 29
******* 
How has your condition affected you?  After giving birth to my son 3 years ago, my feet were feeling slightly stiff and uncomfortable.  The stiff feeling never went away and, in fact, slowly got worse.  I wouldn't say I ignored it, but I almost got used to the discomfort, thinking I was just having normal body aches.


Last year, it started to become significantly worse and I went to my Primary Care Physician (PCP), who told me that it was simply some tendonitis I was experiencing after a childhood of being active.  That sounded okay and I went with it.  I had a neck injury from a past car accident, and attributed a lot of my pain to that as well.  In the past year, my symptoms progressed and spread to my hands and knees.  My feet got so stiff that I couldn't walk in the morning without cracking and popping them at the joints.

I finally went past my PCP and went straight to a Rheumatologist.  I was immediately diagnosed with Rheumatoid Arthritis.  I was more emotional about it than I excpected.  I guess hearing that you have a life-long disease is hard to swallow no matter what it is.  I was told I needed to begin Methotrexate right away.  The Rheumatologist ran down a huge list of scary side effects.  But it is necessary and effective in stopping the progression of RA.  I haven't been able to begin the treatment yet though, because a few months ago I was given a live virus vaccine.  In the meantime, they have me on Prednisone.  It is helping a little, but making me gain weight quickly.  In fact, I was worried about my picture for this project because of the puffiness of my face!

I am in a great deal of pain, and can now only sleep for about an hour at a time before the stiffness and pain wakes me up.  I am a mother and work full time and it honestly makes a lot of my days a struggle to get through.  I am hopeful that the treatment will turn this all around for me.  I am lucky to have the love of my family to help me through each day.

What would you like for other people to know about Rheumatoid Arthritis?  I think the name of the disease is misleading for most.  Although our joints are affected and become arthritic, the disease itself is an autoimmune disorder.  It is not a joint disorder like most believe; it is our immune system losing the ability to identify the difference between the good and bad things in our bodies, so it begins to attack everything.  I told my family to all please read up on this disease, because I feel like they must think I am nuts when I tell them I am having a bad day and feel miserable, when realistically, I look just fine.  I think it has been a lesson to me to not assume that you understand another person's struggles just by looking at them.  There could be a quiet struggle underneath that they are fighting every day, which is exactly the situation for most people with an autoimmune disorder.

What would you want to tell someone who was recently diagnosed with RA?  Well, I am one of those recently diagnosed people, and at this point, still live with severe pain and sleepless nights.  Turning to others who have RA has really helped me understand that the emotions I am feeling are normal, and that there is definitely a light at the end of the tunnel.   So many live with this every day, and so many continue to live normal, comfortable lives.  I look forward to getting to that point.  I continue to research every day so that I can make sure I am doing everything I can to help myself and others who have RA.

Thanks so much Jackie!



18 comments:

Jodi said...

i think jackie looks amazing, in spite of the prednisone! i liked this shot her the best overall, but it does not do her eyes justice. they are incredible!

Leah said...

Jackie, you are beautiful. Your smile is gorgeous and I agree with Jodi - your eyes are sparkly and amazing. And I'm not seeing them in real life! Plus, green eyes, dark hair, freckles, gorgeous skin... magical combo. If you hadn't said anything about puffiness I would never have noticed. Swear on it.

I appreciate everything you said, but this in particular: "I feel like they must think I am nuts when I tell them I am having a bad day and feel miserable, when realistically, I look just fine."

Yes. Thank you. I feel like that so, so often.

All of it is normal, I think - the good and the bad. And thank heaven for the lights in the tunnel, whether at the end or along the way. Glad you are one of them. xo

Leslie F. Miller said...

Jackie, I have to agree that you're beautiful. And you will feel better soon. The fact that you're able to look like this while battling pain shows how strong you are. But don't forget that you are allowed to ask for help when you need it.

Good luck.

onebluewren said...

You are so beautiful Jackie.

And yes, I know that struggle underneath so well. I agree with what you said here "it has been a lesson to me to not assume that you understand another person's struggles just by looking at them", it's so true, and has been an important lesson for me too.

Thank you so much for sharing, and best of luck for the future.

throwingwaffles said...

Jodi, another awesome portrait and profile! Jackie's so pretty; her smile just sparkles.

--elizabeth

minty said...

This is one of your more emotional profiles so far; I'm tearing up reading it. But the photo doesn't show that--it shows a hopeful, beautiful woman. You captured her real spirit, I'm guessing.

Aunt Teena said...

I have to say that I've noticed, and I don't know if it's just by chance, that all the people you've interviewed with autoimmune diseases are very attractive. I'm sure it can't be that this affects only good looking people..it feels a little crazy to even write it, but from your blog one could assume it to be true.

You're all very brave and I hope your lives improve to the point of very little pain and disability.

auntsmack said...

im thrillled that you are doing this project.. there are so many stories to be told. thanks jodi!

Lolabellaquin said...

Jackie,

I cried as I read your description. I remember being in your shoes and waiting for the pain to go away. Although my pain is still very real....it has become much more manageable with the help of my medication, meditation, and many holistic approaches. Hang tough. Prednisone may make you feel puffy.....but your inner beauty and strength is so apparent in your portrait. I worried about the same thing when Jodi took my picture....but she is an artist. Your picture is fabulous!

Keep up the amazing work, Jodi!!

Kelly

Cybergabi said...

Don't feel bad about your looks, Jackie. You're gorgeous and sparkling.

And Jodi, another wonderful portrait and intense story. Such great work you're doing there.

Anonymous said...

Thanks for sending this link Jackie, you look great and I'm hopeful that you will find a treatment program that works for you soon.

PJ Taylor said...

Another beautiful portrait, Jodi, both the pic and Jackie's words. I hate that Prednisone is so bad for us when it works so well. And I totally agree with looking fine and feeling horrible. Thank you, Jackie and Jodi!

jacqueline41 said...

Thank you all for your wonderful thoughts and kind words. I had fun taking the pictures with Jodi, she is such a genuinely great person that anyone would feel comfortable working with her. I just want to thank you Jodi for the opportunity to express my thoughts on RA and be able to reach out to others for support. Thanks again to everyone!! xoxoxo
Love,
Jackie

danisoul said...

oh my, i cried at her words too, and have the same appreciation leah does for "they must think i am nuts" quote. i'm so glad you got to take her picture jodi so we can tell her how well we understand this, and how beautiful she is :)

Anonymous said...

JACKIE YOU ARE AWESOME AND YOU WILL GET THRU THIS YOUR A STRONG LITTLE GIRL!
I WILL SAY A PRAY FOR YOU ALWAYS!
LOVE YA PATTY

Michelle said...

Jackie, you do look amazing. I would never have known you were struggling by looking at your picture. Having RA myself and seeing another "I'm sick but I don't look sick" face makes me emotional. No one knows our struggles. Thank you for sharing your story with us/me. You are yet another inspiration!

Lori said...

How are you now? I live on Long Island also. We have some terrific resources. I hope you are finding them.

Lori said...

Duh! now that I've figured out how you can respond to me if you want to. This is the "Lori" who just posted the previous comment!

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