I have physically dealt with this illness for almost 4 years now but sometimes I think emotionally I haven't.
I just don't understand it sometimes. The majority of the time I look fine. Physically I'm in good shape. Most of the time I feel fine. There is almost no indication that I am sick.
But it's what lurks underneath. My numbers are rarely in the normal range, they are usually just outside of normal. Normal for me, I guess. Like I said, most days I feel perfectly fine. But there are days I can barely move to get out of bed to take care of myself, much less our daughter. Days I am in pain. I am blessed that these days are few and far between. I work hard to take care of myself. Exercise to keep my joints from hurting all the time. But I still have hard days.
This disease has affected so many aspects of my life. I have been rejected for life insurance. Rejected for health insurance and in 6 months current insurance will run out with no foreseeable options. Rejected because even though it is well managed I'm still too much of a risk. Rejected! Not Normal!
Because of the medication I take, my immune system isn't as strong as normal. I try everything I'm able to do to boost it, exercise, supplements, but I can't help that a side effect of the medication is it destroys white blood cells. Because of this I have to take extra care beyond what is normal around sick people. I hate that some don't understand, I try to explain but they just don't get it. Fortunately, in 4 years I have not been seriously ill. But getting something like the flu or even just a fever is potentially very dangerous for me. As in, going to the hospital.
It also affects our family. We have not been able to try to have another baby because of all of it. I'm not even sure where we stand, still. There are all kinds of extra risks and considerations. Sometimes I wish we could just be carefree about it. Not something that we have to plan around.
Still, I am blessed. I live in a time where this disease can be managed and observed, there is less of a chance it can get out of control. Very little chance that it will claim my life. I am physically able to exercise and have the resources to make healthful eating choices. Blessed to have a husband that supports me in sickness and health. Blessed to have a God that provides. I know He can do something amazing with and through this. But it doesn't always make it easy to handle.
It's such a confusing jumble of conflicting emotions.
I don't have all the answers.
I cope, sometimes, not very well.
By the grace of God, I survive.