Looking around the room at the strewn bottles of SunnyD and Diet Coke,
I feel like I live my life in a perpetual state of almost there.
I am always almost there.
Or that’s what everyone tells me. When I catch them up on my life. Tell them about the turtle pace I’m living. The one accomplishment that’s new since last time we talked, if I’m lucky to have one. I have so many things that I have almost accomplished.
When you get far enough behind it kind be next to impossible to catch up. In those cases I’ve found it’s just easier to start over with a new dream. Try again. But this time I don’t seem to have way to do that.
I’m stuck in this stagnate almostness. While I watch the people around me moving forward and moving on. Doing amazing things, living! It’s so awesome to hear about, to know these people I grew up with are living their lives.
It’s not that I don’t have support, it’s not that everyone isn’t listening when I need it; but boy do I feel alone.
My friends and family all try to remind me that I have embryos AND eggs frozen. Most people aren’t lucky enough to have either. They are also reminding that this concept isn’t coming out of know where. I had already considered this as a possible outcome of my health issues as well as my medication side-affects. But Lupus has taken something from me, every step of my life. Step by step I go and Lupus follows behind snatching it all out from under me, since I was a child! I just didn’t want pregnancy to be another one of those things that Lupus took away from me.
I was talking to a friend who was recently diagnosed with Lupus about recognizing symptoms as they show up, telling them apart from other similar symptoms, and understanding if any of the symptoms are related.
One of the things she said to me, when we were talking about her symptoms, that reminded me of my first onslaught of a multiple symptom life was “… I can’t tell how cause my body is a mess.”
My brain hollered Hallelujah, you’ve crossed over to being a Lupie. Our bodies are our temples right? Well here is your temple and no matter how much we clean and dust OUR temple is a MESS!!
But this is the temple we live with; with Lupus. We may not be able to clean , but we can certainly organize our temples!
That’s where understanding how each symptom works in the network of your body’s systems becomes so important.
Well the first steps involve a lot of doctors appointments and tests along with getting my cycle regulated and fertile. Since I was on birth control I have to be off it long enough for my body to start producing eggs again. This CAN take 3 months to a year or so. But I have the time limit of how long before my health deteriorates. If it gets bad enough then trying to have a child wouldn’t be a health-conscious choice at that point.
We see the High-Risk OB this week! We have been consulting with him over the phone and he has been talking with my other specialists. But husband and I get to meet him finally! We will find out what he plans for my Lupus with a pregnancy. I already have the bloodwork done, saw the dentist and eye doctor, my Oncologist’s Okay, my Rheumatologist’s excitement and curiosity. This really is it before the whole waiting for a positive test result.
I’m currently listed as an ALIEN on my insurance causing me to not be able to pick a specific insurance plan… Aliens are only allowed emergency care they explained to me… So I can’t see any of my doctors, specialists, or get my meds, unless I want to pay out of pocket? I’ve always been a US citizen, how did this over site occur you ask? Well, apparently someone in the Co. Job & Family Services had to have checked an incorrect box… yep. That’s the reason I’ve been having insurance issues since March, someone checked a wrong box. It took until JULY for me to find someone who actually knew what was wrong with my insurance. Feel my bitterness radiate.
I’m trying to wrap my brain around what my husband and I will be doing over the next few months. The plan will lead to our lives changing for… well forever.
I haven’t had a chance to really process the idea that I may not actually be able to have children if I wait, like I initially planned. I mean I planned to have my college degree first, hell even a dog!! But the baby is coming first if I want that option. Unless I’m willing to risk not having it…
From the persecutive I have of all the options in my hand right now, the only spade I have to play right now is baby first college after. But boy is that a scary persecutive. Especially since society claims the “proper order” is very specific, of which I won’t be following remotely in this situation. I think what scares me most is knowing this is something I am ready (as you can be) for, but I don’t know if my life with this guy is ready for a baby on top of the complications of his mental disorder and incorporating it into taking care of my health and a baby.
Hey everybody it’s World Lupus Day!
Which of course I slept through, classic Lupie right;)
That is a big part of living with Lupus, to those of you who don’t have it. Think about it like this; such a big day for me to be around, but my body wouldn’t let me do anything today. Imagine living with something where it doesn’t matter how much you make plans, your body wins over any chance of making it to an event or even just getting out of bed that day.
Please think about the people in your life with a chronic illness. Remember they want to see you or make plans just as much as you do. We aren’t flaky or lazy, we fight our bodies daily to do the normal things you don’t think about everyday. If we manage to make it to an event a friend planned or better yet follow through on plans we made with a friend, we Lupus peeps count that as a good day. Hopefully our healthy friends can understand that, this is why having allies is so important. Happy World Lupus Day!!
A common theme I am seeing is how much all of us struggle with the visible aspects of our “Invisible Illness.” I don’t think it’s vanity for us to find it hard to cope with our looks changing when we are dealing with so much change in all other aspects of our body and life. It is often hard to deal with no one knowing or being able to tell we are sick. But there is a different sort of difficulty when we deal with our looks being affected in a way that doesn’t tell people we are sick, but rather just makes us feel even less like ourselves when we look in the mirror. Stay strong ladies! Find little things that you remember you love about how you look, instead of focusing on what we have lost (butterfly rash, hair, psoriasis, etc.). We are all still beautiful, just not always the way the media is teaching us to define our beauty! Do me a favor sometime. Stand in front of a mirror after your next shower/bath and blear your eyes. Then look yourself up and down. It makes it easier to see what others can see. It might help you realize you’re still gorgeous. Then focus on one part of you at a time, not to find the flaws, but to find the little things you still love in your looks. It’s worth it. You’ll walk away smiling. We are all still beautiful, our diseases just make it harder to see it a lot of the time.