Recently diagnosed and worried about the future
Posted , 3 users are following.
Hi I’m 19 and I’ve recently been diagnosed with AS. I was heartbroken but not as scared because my mother and grandmother have AS.
However I’m worried about what the future might hold for me. I’ve already had to change my job because of it and I’ve had a real struggle with my depression. The doctors were talking about that I would have to off of medication when I want kids and be monitored due to my back. As well as possible disability and things. So it’s been a lot to process I know my mother and grandmother went through it but they only struggled with it after they had kids.
I’m also worried about my partner. He has been very supporting and present to all of my appointments and things. I just don’t want him to worry about it. I know I’m going to be ok I’m not going to die. But it’s hard knowing there are so many uncertainties and complications I’m going to face. I want to be able to answer the questions he has and settle his worries as well as mine but I don’t know how to do that.
0 likes, 2 replies
CtKathleen Mega1998
Posted
I’m sorry to hear of your worries and illnesses. I apologize in advance, as my comments usually lack brevity.
I know you’ve been having a tough time. But I want to let you know I have so much hope for you. First, you are dealing with this head-on. You are also being very thoughtful of what this will mean for you life long. How you treat your health day to day can have a bigger impact on your future health than any other factor. You received your diagnosis much sooner than most. You likely have a great opportunity to to set up a healthy AS daily lifestyle.
I know that’s easier said than done. And it’s frustrating when we learn there are so many things to try. Also, what works for one doesn’t necessarily work for another. I’ve tried many approaches. Stress reduction is the most important for me. When my stress goes up, I get sicker. Swimming, pacing activities and acupuncture have provided great relief.
Regular exercise can really hold down the pain(and depression too). Physical Therapy helps many. Remember to stick to LOW IMPACT exercises only. High impact (like running) puts high stress on your spine and other joints and can cause more problems. I stick to a low inflammation diet. I’ve noticed a difference when occasionally eating inflammatory inducing foods.
As for “genetics”, you won’t necessarily have a similar treck as your older generation. You can choose different diets and activities. Perhaps more important is so much more is known about AS and there are treatments now available that weren’t there for older relatives.
AS effects each person differently. My father never had a symptom in his life, but was diagnosed in his 70’s after he hurt his shoulder. A few of us are severely affected, with scores in between.
As for pregnancy, perhaps you’re putting the cart before the horse... Are you planning to have children right away? Many women with AS have children. Ive heard of pregnancies causing remission, and stories of complications. (Go to any baby shower and you’ll hear similar stories from a lovely pregnancy to scary complications.). I had two healthy girls (1 pregnancy with complications for me, probably not AS related, and 1 with 9 months of morning sickness.) I recommend that as you get closer to planning a family, consult your professionals.
I hope this reply is helpful. For most, AS can be managed. For me, I’m ever grateful it is not a map to death and suffering, like MS or ALS.
Mega1998 CtKathleen
Posted
Thank you for your reply. It has really helped widen my perspective on what's in store and how to manage it.
With regards to the children aspect. I am definitely not ready for kids just yet. I had a scare a month ago and that's why the doctors mentioned it. So its been in my mind.
I just need to say thank you again for all the helpful advice and information. I will definitely think about taking up swimming because it will hopefully help with my asthma as well.