womenTALK: Blog

Wednesday, Aug 19th 2009

My Mother Had a Chronic, Debilitating Disease

Deborah Norville, Emmy award-winning journalist and host of Inside Edition

Rheumatoid arthritis (RA) is something very personal for me. My mom had RA. She was diagnosed when I was ten and the larger part of my childhood was colored by the stark reality that my mother had a chronic, debilitating disease. In just a few short years, she went from being the energetic, outgoing mother of four who helped run the family business and chaired the local Girl Scout cookie sale, to being bedridden because of joint damage.

My mom was diagnosed with RA in the 1970s and back then, not much was understood about rheumatoid arthritis. We knew it wasn't the 'other' kind of arthritis, osteoarthritis, but beyond that it was pretty much an information void. The doctors offered up very little about the disease, except to say the treatment options were limited. Even worse, these were the days before the Internet so there was nowhere to turn for mom or our family to do our own research, to learn more about the disease, to learn what kinds of questions we should have asked her doctors. There were few effective treatments when my mother was diagnosed, but if she had known some of the encouraging news about exercise and motion and how to move when you have a flare-up, if she'd heard some straight talk about how to negotiate relationships when RA is part of the equation, if she'd heard about the connection between nutrition and inflammation -- well! I can only imagine how encouraging that might have been. My mom battled RA for ten years before she passed away from complications.

People forget that the physical symptoms are only one aspect of RA. With chronic diseases, there is so much more to manage than just the aches and pains.

I suspect there is a person out there who's just recently learned they have RA and they are busy planning how they are going to 'stop' living. I imagine there is a family member who is thinking, "Hey, this isn't what I signed up for" and filled with misgivings about the future.

I have sometimes wondered if things might have been different if we could have been better informed and were able to be better advocates for my mom. That's why I'm so excited to be a part of New Way RA, a new online talk show focused exclusively on topics relevant to anyone dealing with rheumatoid arthritis. The show takes a whole life approach to RA and features interviews with experts on not just the medical issues of RA, but other topics relevant to the overall well-being of someone living with a chronic condition - nutrition, fitness, relationships and work/career management.

Comments

Aug 25, 2009 14:Aug 2 | Anonymous said

Like Deborah i am also dealing with a family membe...

Like Deborah i am also dealing with a family member with RA. My son was diagnosed with JRA at he age of 4. He is now approaching his 6th birthday and is doing ok. He is a lot of medication which i am not trilled about, but they are helping him live a somewhat normal life. He still has very sensitive joints but the Enbrel has at lease helped slow down the damage. Without that i saw how quickly this deseas was going to debilitate him. It is very hard to watch your child go through this (especially when i did not even know that this desease could have effect children). I pray everyday that they find a cure for Rhuematoid Arthritis, but until then i thank god for all the information and medicines there are available. I will definatly be watching this new show! Thank you soooo much to Deborah and everyone involved in creating the awarness and information that is needed.

Debbie.

Aug 26, 2009 06:Aug 6 | Anonymous said

My mother-in-law also suffered from RA in the 50's...

My mother-in-law also suffered from RA in the 50's and 70's with very few effective treatment options. She also changed from an active mother and wife into someone whose every decision had to be based on the impact that her activities would have on how she would feel tomorrow. She tried very hard to live a full life, but RA limited her life and eventaully killed her. We really regreat that today's drugs were not available for her.

Aug 26, 2009 10:Aug 10 | Anonymous said

~hugs~ I am so sorry about your beloved mom. Just ...

~hugs~
I am so sorry about your beloved mom.
Just recently diagnosed myself, a single mom of two.
My dd is in her early twenties and my ds is nineteen.
I believe that with information and advocacy we can be "empowered".
Personally I would not wish this private "h*ll" on anyone.
My heart goes out to those who have JRA (Juvenile Rheumatoid Arthritis)...and their families.
I worry I may pass this on to my own children. My beloved mom had arthritis but I never knew if it was RA.
She died in her fifties.
I am now in my early fifties.
Hopefully in January I will be going to college. I lost my job mid-Dec. 2008 about a week before Christmas.
A year ago May I had a heart attack.
RA can affect you in other ways besides your joints.
It can affect your organs like your heart and lungs.
It can affect your mobility, it causes pain and fatigue.
Sometimes it can be disabling making it difficult to work or remain working. .
Flares are hard to live with...it affects your home life, social life, and work life.
I believe it can lead to depression because it can wreak havoc on a person and it's very difficult for others to even compprehend let alone understand how hard it is to be finally diagnosed and then living with it. (RA)

Aug 27, 2009 12:Aug 12 | Anonymous said

I was diagnosed about 2.5 yrs ago with RA. This is...

I was diagnosed about 2.5 yrs ago with RA. This is crimping my lifestyle! I have always been active and athletic. I am 57, a retired teacher. I don't like my dr, he doesn't listen, just writes refills. I have started Humira very recently. I hate the drugs, I hate this disease. I'm scared! I have 2 grown sons who I want to be here for for a long, long time. Thanks for listening!

Aug 31, 2009 14:Aug 2 | Anonymous said

I also have RA. I was diagnosed in 1993 by a Rheu...

I also have RA. I was diagnosed in 1993 by a Rheumatologist. I have been on most all meds available over these years. Usually end up with a rash or worse or they just stop working and I must move on to the next one. To all out there, because of my family and their help, my damage is minimal, I exercise everyday even if it is a flare day (flare days I take it very easy.) often times this helps alot. Right now I'm on Remicade,Methotrexate,Advil and a pain medicine if I need it for sleep and exercise. after two years on enbrel it stopped working for me. I'm doing fairly well. The best advice i can give anyone with RA is please continue to see your Dr. Make a list of concerns and questions. above all don't give up. It is OK to cry and feel sorry for your self, just for a few minutes. Then go do the best you can for the day! I promise you will feel better it helps the depression go away.

Sep 02, 2009 17:Sep 5 | Deborah Norville said

A REPLY FROM DEBORAH NORVILLE> Thanks to all for ...

A REPLY FROM DEBORAH NORVILLE> Thanks to all for these lovely comments... to those of you whose doctors dont listen. FIND ONE WITH EARS! There are many gifted and caring rheumatologists out there! To those of you battling depression ... you're right- this disease stinks ( there are stronger words, but I best not use them!) One thing I have studied a lot is the power of gratitude (no, this is NOT a plug for my book) -- but science has proved that when you simply jot down 3 things daily you are grateful for, you have higher immune response, are more active, less prone to illness, get more on the 'to do' list done -- and are more easily in 'positive affect' - shrink speak for ' feeling good.' This means the part of your brain that comes up with GOOD SOLUTIONS to your problems is working on all cylinders. Give Thank You Power a try and make that gratitude list and let me know via dnorville.com how it went for you. Blessings ... Deborah Norville

Sep 02, 2009 19:Sep 7 | Anonymous said

My younger sister has RA and has had it for the pa...

My younger sister has RA and has had it for the past 20 years. She is on medication and still works part time but the RA is taking its toll on her. The Rheumatologist she is seeing said he has never seen RA attack the feet like it has done to her. Her little toe bones are almost non-existent and it is doing some serious damage to her other joints. With the help of the medication she is on she manages to go about her day as best she can. I think the fact that she is still working is a good thing. Some days she comes home and her feet are killing her so she has to take it really slow.

She is the only one of four children of my parens who has this disease. My Grandmother had it really bad and my sister is the spitting image of her when she was young.

I hope the find a cure for this so that people don't have to suffer so much.

Sep 08, 2009 10:Sep 10 | Women's Skin Care Blog said

RA is a horrible thing. I know a very sweet lady t...

RA is a horrible thing. I know a very sweet lady that has it who goes to my church. I'm also sorry for your loss. I think it's great your helping people with RA.

God Bless You,

-Alex McCarthy

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