Maybe it's because I am sero-normal, but sometimes I find myself thinking about when I will be well. Like somewhere in the back of my mind, I think this is a passing thing, just so I can deal with it. That's probably a really unhealthy thing to do, mentally.
I even read all the posts and relate to many of them, yet I still want to believe I can be normal again. I know God can heal me whenever he wants; then again, He may have plans for me that include dealing with Sjogrens. I don't know, it's so much to process.
I have found out who really cares about me. I was too ill to attend a mini reunion this summer. Several of my friends said: "fine, if you can't come to us, we'll come to you. We expect a dirty house, don't you dare clean for us! I am bringing wine and cheese. Nothing else is needed. Tell us how long you can visit. Twenty, thirty minutes? OK. We won't overstay and wear you out. We love you and need to see that you are OK."
Another friend owns a house cleaning business and offered to come clean for free. I am too proud to accept it,but some day I may need it!
My family prays for me and calls to check on me, take me to appointments or watch my 10 year old.
Sigh - does anyone EVER get better??
KellyG
My family
Hi Kelly,
I was where you are right now, this time last year. So I can tell you honestly, that it can get better. :D
I think my improvement is thanks to Methotrexate and my self-education. I am also stubborn as a mule (sorry to all the mules ;D) which has proven to be a real asset.
Don't give up HOPE, Kelly. We have nothing if we don't have hope. Hope always keeps me going when things are bleak.
I completely hear you.
I sometimes find myself resisting taking my meds because I just want my time on them to be OVER! I wish for the days when medications were temporary and completely effective, making me all better. My husband has to work hard to keep me in check ("Honey, that's going to be too much for you"), or I'd be in a constant cycle of overextending myself and then flaring. It's really hard to accept change.
Your friends sound amazing. Maybe the best gift you can give to them is allowing them to care for you. I'd bet you'd want them to let you help if they were the ones who were ill.
AI diseases are unique to each patient, so unfortunately, no one can tell you what to do to make yourself feel better. Don't give up hope, though. There are many approaches and treatments, and one might work great for you. I'm not 100% myself anymore, but I run at about 80% most days now that I'm on medications and have limited the number of activities on my schedule. For me, 80% isn't bad (I used to be frighteningly energetic and busy; I probably seem normal now!), and I'm working on being OK with that.
It takes time and there's a mourning period (sometimes quite lengthy and probably never completely over), but it's possible to adjust to a "new normal," and build a different life for ourselves. Your search for meaning through your faith seems like a great place to start. Like Carebear said, don't give up hope!
Oh my Gosh Kelly, I can TOTALLY relate. In fact, I think of all the things I want to post and ask you guys about when I'm working, playing with my kids, etc, and this is one of them.
The fact is, I HAVE to believe that we can get better. Maybe not CURED, as it's obvious that we will always have a tendency toward autoimmunity. But I DO believe we can heal and put it into remission. Maybe that is naive, but I secretely hope no one posts and tells us otherwise.
Here's what else I believe: I believe the human body has an amazing ability to heal. And I also believe it does not make mistakes. I fully believe that there is an underlying cause of our immune systems attacking us. Whether it is because we don't make enough of a certain enzyme, or it is something we're eating that our genetic makeup can't tolerate, or we encountered a virus that set things off, or whatever. Our genetic tendency is for our immune system to overreact to whatever that underlying cause is. Not that our immune system just one day decided to go berserk. Just that there is some ongoing underlying insult that we don't understand yet. That's what I think. So I basically will never stop doing my own researching and searching for that answer. Think about Celiac disease. I don't even know how they discovered that gluten was causing autoimmune reactions, but I'm sure it came as quite a shock that something so simple was wreaking so much havoc on people.
So no, I am not in denial in the sense that I don't believe I have Sjogrens. I know that's what I have. But I AM in denial that it has to drastically reduce or alter my quality of life forever. I just will NOT let it. I am stubborn and I will not give up trying to heal myself, ever. I will eat nothing but vegetables all day, drink a million cups of green tea, get the exercise I can, take the medicine I can - do WHATEVER I have to in order to continue enjoying life and moving towards healing. In fact, one post I've been thinking of starting is: "What's your 'GET WELL' plan?" ... so we can also share what we're trying, what's working, what isn't, and so on. But most of all, just to remind all of us that we always have hope, no matter what, and some control. We are not "dead at __(insert age here)".
I have to keep believing these things because I just wouldn't be able to drag myself out of bed every morning thinking every day is going to be worse than the last!
I am in denial for sure. I wake up every morning hoping I have just had a horrible nightmare.. Then my body tells me otherwise.... :(
I think it quite normal to be in denial about all this. This is an illness that just keeps on going. The are lots of times I wish it would stop. Everytime I think things have settled down something else springs up. Last year 2010 I found out that I have osteoporosis and that SJS has effect my kidneys. What oh what will it be this year. Nothing, I really hope.
Definitely in semi-denial too!
I faithfully take my 200mg Plaquenil 2x a day and Prednisone 1x a day but I am still not good with using my eye drops as often as I should.
My rheumie has mentioned to me a few times about the importance of using my eye drops and I still forget.
Sometimes I check my eyes when putting on makeup and they look so moist. I have to get it through my head that my eyes are still very dry even when they look OK.
My denial (or is it hope?) is that if I lose the 25+ pounds I've gained with this darn disease and get back on a super-modified exercise regime then I'll feel better. I have to hold on to that hope or I might never get out of bed again.
I'm getting tired of "learning to live my new life," as my girlfriend with Crohn's calls it. The rational part of my head knows that I can't accomplish as much as I used to. I can't accomplish a quarter of what I used to. But I push on (darn holidays) and get sick. For days. So maybe my inability to change old ways counts as denial too.
MB
I don't think I am in denial.
I listen to my body more and KNOW payback is heck. I also don't beat myself up like I used to about not getting the 10 millions things done I wanted to do. Thankfully I am well past the age and mind set where I have to impress anyone. I don't dwell on it all the time and let it emotionally run my life. I deal with stuff as it comes up and if it is partially my fault for not taking better care, I try to do better.
Yeah I have Sjogrens But I think with alot of folks it is more getting OTHER people out of the denital mode that you have Sjogrens. ::)