It just doesn't ever go away, does it?

4/10/08 11:10am

This web sight is a good place to vent .I understand how you feel Maria. I get so tired of telling my husband and kids how bad I feel. And when I go to work with a flare up ( like today) I know that don't understand. So at least here we can vent and know that the people reading understands. And it's good to know we are not in it by ourshelfs.

God bless you , hope you have a better day

Thelma

Hollybgroovin, Health Guide

4/10/08 11:11am

Don't feel bad! You can go on and on and vent whenever you need to. I do it all the time :) I am 28 and have been diagnosed for 3 years, live in pain for 5 years, and have had RA for over 13 years. I have a 5 year old and an 8 year old, so I to know what it's like to be unable to play/run with them. And yes it is devastating. I had to quit working about 8 months after my diagnosis because I was barely able to get out of bed by myself. It's awful living with an invisible disease because no one can see or feel how much pain we are in on a constant basis. I dont think living with RA ever gets any easier. We may be able to handle it better, and learn how to function better, but living with it is just plain hard! Feel free to vent whenever you need to, we are all here for you! Good luck and best wishes!

allenswife02

4/12/08 2:52am

Finally!!! I say that because there's finally someone who understands what I'm going through! I totally understand your position!! Just need to say one certain thing first though. About your kids and you not being able to do some things with them. Don't let that get you down, because you are their hero already! Your a single mom and YOU'RE raising them! YOU take care of them! YOU are there for them! Not to mention, you're an inspiration to me as I have been trying to concieve for 6yrs and still no success. I want children more than anything in the world. The fact that you're fighting this and you have children let's me know for certain I could do it too, if I ever get that wonderful chance. So, thank you. Just know you're not alone with the pain, sorrow, stress and emotional and physical rollercoaster ride you're going through! I wish you the very best and good luck on your journey. Keep fighting!:) Together we can all beat this!!

allenswife02

4/12/08 2:57am

Finally!!! I say that because there's finally someone who understands what I'm going through! I totally understand your position!! Just need to say one certain thing first though. About your kids and you not being able to do some things with them. Don't let that get you down, because you are their hero already! Your a single mom and YOU'RE raising them! YOU take care of them! YOU are there for them! Not to mention, you're an inspiration to me as I have been trying to concieve for 6yrs and still no success. I want children more than anything in the world. The fact that you're fighting this and you have children let's me know for certain I could do it too, if I ever get that wonderful chance. So, thank you. Just know you're not alone with the pain, sorrow, stress and emotional and physical rollercoaster ride you're going through! I wish you the very best and good luck on your journey. Keep fighting!:) Together we can all beat this!! By the way, my name is Keisha. I'm 22yrs old. I have Polyarticular Rheumatoid Arthritis, Pleurisy, Raynaud's Phenomenon, Infertility and now I have something goin on with my heart. I'm on many medications and have been on many before. Right now I'm taking Remicade IV infusions, Methotrexate, Folic Acid, Hydrocodone (Vicodin), Medroxyprogesterone. Anyway, if you ever need anything at all..feel free to contact me anytime. My email is allens_wife02@hotmail.com and my yahoo messenger name is the same (allens_wife02). Also, if you'd like..you can join my website that I'm trying to get going. It's www.carecentral.com/providing-hope Hope to see you there! Again, good luck!

Lene Andersen, Health Guide

4/14/08 12:27pm

Hi Keisha,

A quick comment on infertility. Of course, I know nothing about your particular case, but a lot of arthritis meds can inhibit fertility. I know someone with RA who tried for years to get pregnant, then finally found out that methotrexate inhibits fertility, she went off it and now has two kids. One caveat, though - stopping your arthritis medication should only be done in consultation with your specialist. Timing is everything.

allenswife02

4/14/08 2:17pm

Thanks. Yea, I already knew that, but I think it made some permanent damage. Just like my heart problems and Pleurisy I believe are from the medications. Thanks so much for your response and thanks for telling me she finally concieved! You've given me hope! Oh, hope you don't mind if I ask a personal question.. Did she have to use any fertility drugs or any kind of fertility treatments to succeed? You don't have to answer that (of course). Thanks again!!

Sincerely,

Keisha

Lene Andersen, Health Guide

4/15/08 3:01pm

I don't know for sure - she's a friend of a friend, so I only know the big picture. I'm pretty sure, though, that she didn't go all the way to injection-type fertility drugs (The Big Guns), but she may have taken the less intensive pills.

Glad it helped a little.

JJ

4/16/08 12:35am

Hi, Just wanted to say that methrotrexate is actually used to induse misscarriages{Sp}

So there maybe hope for you if you can change some meds around. A good friend of mine has had RA for years with lots of deformities so very severe. Her best health was when she was pregnant never felt so good. So good Luck. And if it doesn't happen, then god has a special someone already out there just waiting for you. A mother doesn't come by birth a mother comes by love.Good Luck and god blessings.

allenswife02

4/12/08 5:17am

Hello Maria,

Maria

4/14/08 4:24pm

Hi, it's Maria....I'm sorry that I didn't respond the moment I read ur email, I wanted to but my hands wouldn't let me type too much....you have given me such hope and encouragement. I find you to be an extremely strong and beatiful young lady. I saw ur pics and I wish you all the joy you can possibly find in life. Where I have my children-and God-to keep me going...it sounds like you have a wonderful husband that you have been blessed with. As far as infertility goes; have you ever looked into adopting? i know that you would wish to have your own child, but there are so many children out there that would be so blessed to have a present like you as their mother...you will make a great mother. You may have been called upon to be that special mother to take care of some child that wasn't wanted from their own mother...I'm sorry if I'm butting into anything you may not want me to....I'll end it there....hope to keep in touch with you; keep smiling, again,you're such a pretty young lady....turn that frown upside down!

Maria

Lene Andersen, Health Guide

4/14/08 12:02pm

One of the worst things about having this disease is that it never goes away. It can push you right past depression and into despair at times. Over the years, I've found that when I'm depressed or in despair, it usually means that my disease isn't controlled well. Maybe you need to go back to your doctor and asked to get put on yet another medication? I used to dream of a medication that would do it just once and for all, but I've come to realize that each medication I'm on will take me another 2-3 years into the future and then it's time to find another one. There are some good ones out there, though - have you tried the biologics yet? I've been on Enbrel and am now on Humira and although they are very serious drugs, they also kick serious ****.

I'm sorry you feel that your surroundings don't believe you. Do you have any outward manifestations of the disease, like deformities, redness, swelling, etc.? In a warped sense, waving your gnarled fingers in somebody's face gives you some credibility. Pretty sad, though. But you're kids will get you through - if you can't play soccer with them, maybe you can find something that's less physically intense to do with them. Best of luck.

Dallas

4/14/08 7:06pm

I can't say that I have experienced any of the pain that you live with but I have some friends and family members that have. I really hate to see anyone in pain. I did some research to help find somewhat of a pain relief for my family and friends. It seems that all of the pain meds just cover up the problem for a period of time. I actually looked into health and nutrition and found a product called MonaVie. It has seemed to help everyone that I have told about it. My aunt used to always go to the doctor to get cortizone shots in her knee and since she has been taking her 2 ounces twice a day of MonaVie she tells me that she doesn't think that she will have to get those anymore. I have found a great site to help people get some more info about MonaVie. I hadn't ever heard of this and it has become the greatest thing for many people that I know.

Dallas

4/14/08 7:07pm

Sorry I didn't leave that address for you. www.forperfecthealth.com

jj

4/16/08 12:18am

Put a smile on your face and scream and vent. It will make you feel better. Put your shoulders back and look at yourself in a mirror and say," I am not going to let this get in the way of my life with my children ",and go on living our life!!! You live it at its best because God is there right with you and he is helping you thru it all. It may seem like a burden but it is not the end of the world. I found out about 18 years ago that I had RA and I really let myself get down. Then one day I was leaving the Mayo Clinic and a gal was there with her little girl. Her little girl was about the age of my youngest. The little girl was holding a puke tub for her mother you could tell the mother must have just gotten done with a chemo treatment. That day changed my life I no longer worried about my not doing certain things I started doing what I could and more of them. So throw those shoulders back and hang in there. Remember you are not alone. You have your Children and all of us.Always remember your children no matter what age they are they need to feel like they are there for you and your disease. They need to know and understand the disease,because if they don't they imagine the worst and get very confused and scared about what mommy has. So you go girl and keep that chinup.

Anonymous

4/18/08 11:56pm

Yes, I can identify with what you are experiencing. I am 54 and have been diagnosed for about 3yrs. At first when I was diagnosed, I didn't believe it, but one day, I awoke to extreme pain and could not physically lift my self to get out of bed,walk, or hold a toothbrush, and just the slight touch of a blanket on my hand would cause great pain.

I understand what you mean when you say an uphill battle, because although I had a fighting spirit in the beginning, as time goes on and more drugs are tried, you start to wonder will this be the miracle drug this time?...All I can tell you is I take one day at a time..and although the bad days are starting to out number the good days.. I still try to enjoy the good ones no matter how short.

You have had RA longer then myself and have sustained your self, which tells me that you are still a fighter no matter how discouraged you may be because of treatments.

I admire you for your stamina, I know how hard it is just to try to get through the day, but also you have children that you are responsible for and that probably takes more then you can give at times. You may not be able to do everything you want with the children, but as a mother you are still there for them.

I don't think there is any easy answer for RA, because everyone has it to varying degrees. I am still hoping that I can get this under control, because it is frustrating being swollen and in pain all the time. But, regardless of our situations, I think that positive thinking will help us continue to cope.

Cella54

Kristen

8/26/08 11:41pm

I deff. understand how you feel. I am 15 now and i was diagnosed with JRA when i was 13. I play vollyball and softball. When i first got it, I was in terrible pain. I couldn't walk down the steps so I slept on the couch(my room is upstairs), I walked on the sides of my feet and had a limp, I couldn't even move my elbow without it locking or cracking. It was horrible. I never gave up on sports but when I couldn't do all the things my peers were doing, they thought I used my JRA as an excuse. Thats not true at all. I was in pain 24/7 and they couldn't even begin to understand what I was feeling and that made me really mad sometimes. I just wanted to be normal like everyone else, Don't get me wrong, I was happy I got out of running sometimes, but i would rather run then feel the pain I felt. My family even says don't use it as an excuse which is wrong because they don't feel the pain that I do. Now its better but it will never go away. I hope you can get better like I did, but I will never forget the pain I went through and still do sometimes.

-Kristen

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