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Posted by on Mar. 30, 2008 at 10:41 AM
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Hi Everyone
I decided to start the group a couple of weeks ago because I became tired of trying  to find moms like me out there that are dealing with little ones and having to cope with RA.

I had nothing against women that have grown children its just that I need someone to talk to that could relate to what I deal with everyday.
Whether it be a discussion about pregnancy with RA, chasing a 2 year old or walking your kid to school.

I was diagnosed with RA when I was 19 the doctors mentioned that it could have been this car accident I was in  that could have brought out the RA that was eventually going to hit me. Hmmm.... I still don't know if I believe that.
I married my high school sweetheart at 21 and lived a life of swollen painful hands and feet for years after....more poor husband, what he had to deal with for me.
Despite the pain I continued to work as a Medical Assistant and then I finally became pregnant and decided to quit my job and stay at home.

Of coarse it was planned because I had to get off most of my meds but I felt it was worth it.

I was happily pregnant for 5 months then everything went wrong.... I started to feel funny, some stomach pains and some chest pains. I knew something was wrong. I called my doctors office millions of times for the nurse to keep repeating "All expecting mothers feel uncomfortable at this stage of the pregnancy."
But I knew something was wrong.

Later that week I went in for a normal check up and I was rushed to the Hospital and an emergency C-section was performed. My son was only 1lb and fought for his life for almost 3 months. He passed away in January 2002
Later I was told that I had pre-eclampsia....my blood pressure was so high that they thought I wouldn't make it one more day pregnant without losing my own life.

I of coarse was devastated and my husband, but I decided to talk to other doctors that were high risk specialist and what I found out was that my doctor should have ran a simple blood test that would have told them that I had Anti-phospholipid Antibody Syndrome. And apparently most women with RA develop this blood-clotting problem.

I changed doctors and decided to try to get pregnant again I was put on Lovenox, a blood thinner, that had to be injected everyday by myself in my stomach. Yeah it was horrible and I became so bruised from the shots I couldn't lean my belly against anything without screaming in pain. Good excuse for not washing dishes ;)

But now I have 2 beautiful children and once a upon a time I thought my RA would get in my way again but I'm happy  to say I kicked RAs ass.
by on Mar. 30, 2008 at 10:41 AM
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Replies (1-10):
AdrianeT
by New Member on Apr. 24, 2008 at 7:00 PM

My name is Adriane and I am 34 years old. I was diagnosed with RA today. I am married and I have a beautiful 7 month old daughter named Bella Rose. We live at the Jersey Shore. I have had joint pain for quite awhile but did not think much of it until last month when I came down with severe flu-like symptoms (the worst joint and body pain I have ever felt in my life) all of a sudden. I was taken to the ER and that's where the tests began. My primary care physician thought it was a parvovirus at first and then possibly Lyme's disease. When lab work ruled these out (and medication failed to work) I was referred to the Rheumatologist. The Rheumatologist confirmed today that I had RA. I wasn't surprised. I was really hoping that wouldn't be the diagnosis, but I definitely wasn't surprised when it was. My poor husband was surprised. I'll never forget the look on his face - Poor guy! So we are at the very beginning. I will be taking my first meds tonight.

Have a great evening all!
Hope you're all feeling well today!

annabelles
by Group Owner on Apr. 28, 2008 at 4:04 PM

Quoting AdrianeT:

My name is Adriane and I am 34 years old. I was diagnosed with RA today. I am married and I have a beautiful 7 month old daughter named Bella Rose. We live at the Jersey Shore. I have had joint pain for quite awhile but did not think much of it until last month when I came down with severe flu-like symptoms (the worst joint and body pain I have ever felt in my life) all of a sudden. I was taken to the ER and that's where the tests began. My primary care physician thought it was a parvovirus at first and then possibly Lyme's disease. When lab work ruled these out (and medication failed to work) I was referred to the Rheumatologist. The Rheumatologist confirmed today that I had RA. I wasn't surprised. I was really hoping that wouldn't be the diagnosis, but I definitely wasn't surprised when it was. My poor husband was surprised. I'll never forget the look on his face - Poor guy! So we are at the very beginning. I will be taking my first meds tonight.

Have a great evening all!
Hope you're all feeling well today!

Adriane, I'm so sorry that you have been diagnosed with having RA and for some one like myself who has had it for 15 years it's hard to hear that other women with children have to deal with this disease. It isnt very pleasant to have RA but one good thing unlike when I was first diagnosed there are really good meds out there now to help with the effects like the joint damage RA is mostly known for. Unfortunately it is a little late for myself but I'm very happy that I should not have much more damage from now on since the new meds I was put on have really been helping to prevent that. You can rest assure that if the meds you were put on do not help with the swelling,pain and stiffness most likely there is another drug out there that will do the trick. So my advice to you is make sure you really like your Rheumatologist because you should trust and have good communication between the two of you and always call the office when you're not having a good day. Always make sure to keep the doctor informed so they make sure your meds are working so you can be there for your family. Thank you so much for sharing your story and remember we are all here for you.
jeninjuice
by on Jun. 1, 2008 at 7:09 PM
hello
my name is jennifer and i'm gonna be 29 on tuesday,actually! I was diagnosed with RA 2 months after I gave birth to my beautiful son Dominic.
I had always had aches in my wrists, and they would get so swollen I couldn't do anything with them. Doctors told my I had tendonitis, or pinched nerves. So I took my Aleve, ibuprofen, and went along my way.
I had my son last July. I began noticing cracking in my knees first. I started getting a pinch in my neck, and my pain traveled down my arms, into my hands.
Then, like literally out of nowhere, I sat up in bed to go to the bathroom but I couldn't stand up. Both my wrists were swollen, I couldn't lean on them without being in excruciating pain. It just felt like my knees 'weren't there'. That's the only way I can describe it.

Within days I couldn't walk. My ankles, while still swollen from the pregnancy, were so painful. My feet hurt to put pressure on. I didn't know what the hell was going on. I would be this way for a few hours before I could get up and go to the bathroom.

I would have keep Dominic's bottles on the nightstand next to me, because I knew I couldn't get up and do anything before 11 am. I would have his diapers and wipes within reach, also.
I'm not one to take meds, and apparently, I'm also a little stubborn to go running to doctors.So I went to a chiropractor instead, he told me I had 'forward head syndrome'. (bbthh! I smile at the quack now)

anyhoo...I was diagnosed with RA. This has been the most eventful year of my life. Big ups and big downs. I HAVE MADE UP MY MIND not to let this determine me, I will live 'with' it. I will live.
(do I sound like a commercial? ha)
i'm very glad to have found this group, I am kinda thrilled to be here, with other women like myself. It's hard to describe pain in our degree to someone who just doesn't know.
 I'm glad you made this group, annabelles, I could really use someone to talk to also.
annabelles
by Group Owner on Jun. 2, 2008 at 8:13 PM

Quote:


anyhoo...I was diagnosed with RA. This has been the most eventful year of my life. Big ups and big downs. I HAVE MADE UP MY MIND not to let this determine me, I will live 'with' it. I will live.
(do I sound like a commercial? ha)
i'm very glad to have found this group, I am kinda thrilled to be here, with other women like myself. It's hard to describe pain in our degree to someone who just doesn't know.
 I'm glad you made this group, annabelles, I could really use someone to talk to also.
AWWWWEEE....thanks hun....we're all here for ya if you need to talk. And yes you do sound like a commercial but that's okay if there's something I've learned all these years  that I've been dealing with this disease is that you have to find what motivates you...what puts you in that state of mind..the "I will not let this kick my ass but I will kick its ass by living my life" state of mind. Us moms not only have to be there for our kids but also for ourselves.
Thanks for sharing your story and remember take care of yourself for your children.
bigbonjovifan
by New Member on Jun. 3, 2008 at 1:38 PM
I was diagnosed in Jan '08. I do not have "small" children but I have an 11 yr old & a 9 yr old at home.  (I also have a 19 yr old & a 17 yr old. They do not live w/ us currently.) I am 38 yrs old.
All of my joint pain started in the summer of '07. It progressed until Dec then I went to my PC Dr. They did blood tests & tried to figure out what was up. When they got the blood tests back I had an elevated Rheumatoid factor. So she referred me to a Rheumatologist. I saw him in Jan. He did more blood work, an exam, & x-rays of all of my joints. He said I had one of the highest RA factors he had seen. (GREAT!! I like being @ the top of the list. NOT!!) The majority of the pain is in my hands & feet (especially my right hand, arm & foot. & I am VERY right handed. Typing kills me too.) He put me on NSAID's for the pain. Hasn't worked yet & I am on my 4th one. I started methotrexate 2 weeks ago. Hasn't helped yet. It makes me feel VERY weak. Plus I am prone to mouth ulcers & now I have a HUGE on right inside my lower lip. I go back to the Rheumatologist on 6/24. 
I am not dealing w/ this very well. I am very independent. I hate to ask for help. My husband does not deal w/ me being ill very well. So he is having a hard time realizing that I am not the wife I have been for almost 14 years. I am not even the wife that I was a year ago.  I cannot do all the things I used to do for all of them. They are actually having to help me now.
Hope I can learn some more about this disease & maybe help some one else.
Ellie83
by on Jun. 3, 2008 at 10:24 PM
Hello all!  I'm Elizabeth, 25, live in KS with my awesome fiancee and our two super awesome kids:  Ava is 7 years old and Liam is 10 months. 
     I was diagnosed with RA when I was 17, just a few months after Ava was born.  The pain was constant and mild, with flare ups anytime the weather would change.  Since Liam was born, it's been a whole new round of the RA.  I was in remission when I was pregnant, but two weeks after he was born, I experienced the worst pain of my life.  I've had two children all natural and this was far beyond that!  I was put on Prednisone, and "toughed out" the pain for 6 months so that I could breastfeed.  The pain was getting so bad that I couldn't hold my baby, change him...or myself.  It was ridiculous.  So my rheumatologist put me on Sulfasalazine.  That hasn't been working, so Methotrexate was added just last week. 
     I'm kind of a big health nut and really into natural health care, so being put on Methotrexate is a BIG deal for me.  It seems like anymore you can't take one drug for one problem without it causing something else in your body to go wrong.  My sister sent me some info on an alternative health care specialist in the Kansas City area and I am thinking about setting up a consultation with him.  Hopefully I can kick my RA in the ass!
     RA hasn't just affected my joints and my immune system.  I have a history of depression and social anxiety and the RA has just made all of that skyrocket.  It's the worst feeling and it seems like no matter what I do, I can't kick the pain and can't enjoy things that I used to do.  I'd like to say that this disease doesn't define me, but right now, it sure feels like it!  My friends don't understand when I can't do the things that they do.  They don't understand the severity of the pain and my limitations.  And at 25, it plain sucks.  I shouldn't be feeling this old!
     Okay, enough of my rambling....I'm glad that I joined this group and am looking forward to meeting others who are dealing with the same problems as me and who understand what all of it is like.
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annabelles
by Group Owner on Jun. 5, 2008 at 12:11 AM



Quote:

He put me on NSAID's for the pain. Hasn't worked yet & I am on my 4th one. I started methotrexate 2 weeks ago. Hasn't helped yet. It makes me feel VERY weak. Plus I am prone to mouth ulcers & now I have a HUGE on right inside my lower lip. I go back to the Rheumatologist on 6/24. 
I am not dealing w/ this very well. I am very independent. I hate to ask for help. My husband does not deal w/ me being ill very well. So he is having a hard time realizing that I am not the wife I have been for almost 14 years. I am not even the wife that I was a year ago.  I cannot do all the things I used to do for all of them. They are actually having to help me now.
Hope I can learn some more about this disease & maybe help some one else.

I'm very glad you shared your story with us and I wanted to tell that PLEASE.. if you are not feeling better on the medications you have been put on after 2-3 months..COMPLAIN Over the 15 years I've had this disease you better believe I've had some bad docs that didn't listen to crap! I finally after 5 years of searching found the best rheumatologist ever... she listens to every complaint and never interrupts me when I speak ,which is something I've come across often when speaking to physicians, she has always changed my meds when I didn't feel any difference in my pain level so please BITCH at your doctor if you're still feeling crappy. There are many drugs out there now for RA and I've been on most of them ;)  Right now I'm on Humira and Methotrexate but I had been on Enbrel an Methotrexate for years and just decided to try something new because I was starting to experience some ankle pain. My rheumatologist has told me that after a while your body will become immune to the meds and you have to try something new.
As for your hubby, tough poo, he'll have to stick by your side because us women are always babying our hubby's when they're under the weather but when we're not feeling to hot they can't seem to help with something as simple as unloading the dishwasher. So don't worry about bothering any one or being a burden just take care of yourself and do what you can and ASK FOR HELP when you need it.
Take care of yourself!
annabelles
by Group Owner on Jun. 5, 2008 at 12:29 AM

Quoting Ellie83:

.....   I was diagnosed with RA when I was 17, just a few months after Ava was born.  The pain was constant and mild, with flare ups anytime the weather would change.  Since Liam was born, it's been a whole new round of the RA.  I was in remission when I was pregnant, but two weeks after he was born, I experienced the worst pain of my life.  I've had two children all natural and this was far beyond that!  I was put on Prednisone, and "toughed out" the pain for 6 months so that I could breastfeed.  The pain was getting so bad that I couldn't hold my baby, change him...or myself.  It was ridiculous. 

...........My sister sent me some info on an alternative health care specialist in the Kansas City area and I am thinking about setting up a consultation with him.  Hopefully I can kick my RA in the ass!
  
  ................. It's the worst feeling and it seems like no matter what I do, I can't kick the pain and can't enjoy things that I used to do.  I'd like to say that this disease doesn't define me, but right now, it sure feels like it!  My friends don't understand when I can't do the things that they do.  They don't understand the severity of the pain and my limitations.  And at 25, it plain sucks.  I shouldn't be feeling this old!
    
ELLIE83 I WILL NOT ALLOW YOU TO TALK THAT WAY!!! RA DOES NOT DEFINE YOU!! I'm here to tell you that I've had this disease, like you, since I was a teenager and also during my 3 pregnancies...as a matter of fact I lost one child because of this disease. When I was pregnant with my son Christian I started to develop a blood clotting disorder and it caused me to have severe hypertension. I was forced to have my baby early (26 weeks gestation) and he fought for his life for 3 months...for 3 months I sat by his side as he only weighed 1 lb and 2oz and cursed the crap out of RA and went through a major depression after he passed that I felt I would never get out of bed again and never try  to have a baby again but suddenly one day I thought "F U RA!!" I will get my life back and I will do whatever it takes to fight this because more than anything I wanted  to be a mother and I talked with lots of different OB's and blood specialist and high risk doctors to figure out how I would do just that and now I have 2 beautiful children and I'm glad I decided to get out of bed that one day and move on with my life because I will not let this disease define me and Please don't let it bring you down... fight to get your life back.
Take Care of Yourself!!
nena777
by New Member on Jun. 26, 2008 at 9:04 AM
Hello my name is Irene and I am 32 years old and I live in Chicago.

I was diagnosed last year in September of 2007 with RA.

Right now, I am on 5 mg of prednisone -the pill we love to hate, LOL and also on 200mg x 2 of plaquenil.

Me and hubby are TTC our 1st baby... so this is basically the only meds that I have gotten an ok from my reg dr, my rhumy and my OBGYN.

There are days when I just want to throw in the towel.... I have an appt this week with my rhumy because I dont think this concotion is working for me anymore... THe pain has gotten so  much more excrutiating day by day

I currently applied and received a disabilty placard for my car... which helps so  much when I have a bad flare up... never in my mind did i ever think that I would ever need this, but thank God that it is out there and I will use it.

So thats a little about me.. thanks for letting me share

Irene :)
annabelles
by Group Owner on Jun. 26, 2008 at 10:04 PM

Quoting nena777:

I currently applied and received a disabilty placard for my car... which helps so  much when I have a bad flare up... never in my mind did i ever think that I would ever need this, but thank God that it is out there and I will use it.


I know what you mean Irene...I had to get one too a few years back and its embarrassing when there are twenty-something year olds walking past me as I'm getting out of my car but it helps and forget those twenty-something year olds!! They're just jealous that they have to park so far away!!
Thanks for sharing hun!!
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