HI was diagnosed at age 26,have been on medication for 4 years now,seems as if it’s getting worse especially the pain. I have 2 young beautiful children.I’m afraid hat I won’t that I will not be able to be there for my children the way I always thought I would, like teaching them how to ride a bike or go on hiking trips or even playing sports with my children. I am afraid of missing out on their childhood because of my mobility.
I am so sorry to hear that you are struggling so much – especially since you’ve got two little ones to deal with! I was diagnosed at age 25 and I have a two year old and another on the way, so I completely understand the difficulties you are facing. It can be really scary to think about how to be the best parent you can when you are also dealing with a chronic condition.
However, it’s also really important to remember that RA is a chronic condition – which means there isn’t really a “final stage.” Instead, RA is something that you will (unfortunately) have to manage for the rest of your life, and there will be a lot of ups and downs. It sounds like you are having a downturn – where you are dealing with a lot more pain and the medication isn’t working as well as it perhaps once was. That means it is probably time to go talk to your rheumatologist about changing your treatment plan. Sometimes, for unknown reasons, medications that once worked simply stop working. The ever-changing nature of RA can be really frustrating, but luckily there are lots of good options for medications today so hopefully you and your rheumatologist can identify one that will get you more improvement in your symptoms than you have now.
In the meantime, remember that we are here to support you! In particular I understand the struggles of dealing with parenthood and RA at the same time – and I am always happy to chat about it or even just listen if you need to talk to someone who understands.
Thank you so much Mariah ,It’s good to talk to someone who understands.My pain levels have really increased for the past two months,my doctor increased my dosage and said we’l have to wait a while before he can change anything. It is frustrating especially being someone who played a lot of sport and now can’t even walk steadily,I guess that I will have to learn to live with it.What also freaks me out is seeing someone who has been physically deformed by RA and thinking that I am going to reach that state. Thank you so much for your kind words and for just replying, its very comforting however I am also truly sorry that you have RA too.
Yes, unfortunately when you change dosages or medications it can be a very frustrating waiting game to see if it makes a difference. I have been there too. We just have to try to be as patient as we can – and kind to ourselves when we feel frustrated in the process! (Easier said than done I know!) Luckily, the medications that exist today are significantly better at preventing long-term damage than the treatment options that existed just ten years ago. That means that those of us who are dealing with RA today are a lot less likely to reach a state where we are physically deformed.
Hi Mariah,really glad to hear that.Just want to let you know the medication I’m on, Salzapyron,metertrexate,folic acid and Coxflam(NSAID)Perhaps if there is anything else I could ask my Doctor about? Thank you so much. Its amazing how words of encouragment even by a stranger can make a difference in someones life:)
You may want to ask your rheumatologist about whether it is time to move on to a biologic option. Often those medications can make a huge difference in a person’s quality of life when ordinary DMARDs (disease-modifying antirheumatid drugs, like methotrexate) are not quite enough.
I just saw this “conversation” so you may all ready have talked to your rheumatologist. However, I take Hydroxycholoquine in addition to Methothrexate. It has helped me a lot. I also take Folic Acid, but thankfully do not have to take any pain meds now. I’m in clinical remission. What works for one person doesn’t all ways work for another, but it might be worth checking into the Hydroxycholoquine.
Good point Patricia. In fact, a combination of sulfasalazine, hydroxychloroquine, and methotrexate has been found to be as effective, and much cheaper, than a biologic. http://www.medscape.com/viewarticle/806430
If you are still around the forum, I hope things have gotten better for you.
I see things just a bit different.
First, As an RA fighter, you need to keep in touch with your doctor to get and keep up with the best medical treatments for you as possible. Having RA can suck big time.
Second, Don’t look at the future for the things that you might miss doing with your children. Look for the little things that they will remember doing with you. Kids love their fathers, not because you teach then to ride a bike, throw a football or serve pretend tea in little flower painted cups but BECAUSE you are their father. Be the best darn dad you can ever be. They will love you back and will want to help you on your bad RA days. It is love. It is family. Children will understand and if you are honest and truthful to them, they will not judge you. Sure, they may not have that memory of you with the first bike ride without training wheels, but they will remember the hugs, laughs, and that rainy afternoon where you played 50 games of Tic-Tac-Toe together.