I don’t know where to start to update, so I”m going to start with the latest that’s going on.

 

Still grieving Lily (as I’m sure I always will), but I’m feeling alive again.

 

I had another echocardiogram a couple months ago to check on my murmur. When I went to get my records for social security the hospital included the cardiology report. Someone I know, who is a nurse, read it and explained it…. NOT OFFICIALLY! The understanding of it is that I have two small murmurs, and I have some enlargement of my heart. Now, whether this is lupus or not, and what level of concern this is, I’ll find out on Sept. 11. 

I’m still on prednisone because I ccan’t go below 5mg without neurological symptoms starting up. I’m pushing for a neuro work up when I see my rheumy.

I’m having a ton of foot pain…. the doctor I saw at the walk-in clinic thinks it is from my lupus, attacking the stationary joints in my foot. Xrays have been taken and I’ll find out more on the 11th. 

 

Lupus just seems to be out to get me, even when I’m on 3 meds strictly for putting it into remission 😦

 

The kids are great. Gamer started HS this year, and Duckling is in her last year of elementary school.

This blog has become so much mroe than it originally was planned to be, and I really need to get back to working on it now that I finally am feeling more like myself again, and feel like my life is a bit more mine rather than Grief’s finally.

I want to write more about Babyloss, as I have felt for a long time, and feel even more strongly now, that it’s taboo and really shouldn’t be.

I also plan to do more writing about my health issues, not just from my experiences, but getting better info out there.

My other plan is to write more about sex ed, as I feel there is a lot that just isn’t known… I have friends and relatives who ask me questions about infections and pregnancy and things, and that knowledge needs to become more mainstream. Also about anatomy and how the body works, as I’ve only really started to understand in the past 4 years or so, and even now I’m still just scratching the surface, and these things really need to be understood!

And, I’ll likely write about sex and chronic illness and pain, and about sex with my specific health issues, and those posts will include personal things…. don’t worry, I will make it VERY obvious when those posts come up, so that no one who doesn’t want to know the more intimate details of our sex lives won’t have to…. this is something Johnny and I talked about a couple years ago and I’ve just never gotten around to… and I REALLY want to do those posts, as I feel these issues aren’t talked about enough!

Here’s the real reason we never go …

Mal: We are not gonna die. You know why? Because we are so… very… pretty. We are just too pretty for God to let us die. Huh? Look at that chiseled jaw!

I did A LOT of driving yesterday. My perinatologist’s office (well the one I’m seen at, which he’s only at 2 days a month) is somewhere between an hour and a half and two hours away…. so I get in up to four hours of driving in a day when I have to go there, plus sitting in a doctors office, and the worry that accompanies those appointments, etc.
I know that even being in a car for an hour or so (the drive each way to my OB’s office) is hard on me, so I knew this was going to be difficult for me, and I made sure that we had nothing going on last night so that once I got home I could just sit and rest until curling up in bed. Johnny wasn’t even able to make it because this weather we’re having is so hard on us, and he’s out of work right now, so no ins. for meds, so he’s off pain meds and had himself weaned off, so there was no way he had enough pain management to be able to go with me.
I went to bed before 10 last night (though Johnny was helping me with some personal care – shaving, that sort of thing, so while I was in bed it was probably closer to 11 before I fell asleep), and ended up out of bed again at midnight or so, hurting so bad I could barely move or breath (not that my chest hurt, but just that my pain was so high it was taking effort), and trying not to throw up from the pain. I eventually started crying from the pain, which is pretty rare for me no matter how severe. Usually if I’m crying when I hurt, it’s my depression kicking in, not from how much I hurt. I finally got some food (bread with pb on it) in me, and got the pain meds taken, but it took something like an hour to kick in enough for me to consider laying down. Thankfully my friend Sara was awake and let me cry and whine and rant at her for a few while I let the emotions out, then we talked about other things until I was able to rest again.
I slept (with a lot of tossing and turning) until about 9 this morning, when I couldn’t lay in bed anymore and got up. I had breakfast and took some meds, then we had an appt to go to, which unfortunately had to be cancelled due to some vehicle issues (I may have left the lights on and killed the battery, and we couldn’t find our jumper cables in time)….
My pain has kept on going all day, and I can only tolerate so much of my pain meds in a day …. I’ve always had trouble with pain meds, but with the pregnancy I’m having even more issues with them. I’m hurting enough now that I’m considering wearing what I have on right now to my PT appt…. The only time I wear anything but jeans or shorts out (or currently maternity pants) is in the winter when I will wear a pair of warmup type pants I have that are better for dealing with the temps we get out here, they are warmer than my jeans. And they don’t look like pajamas.. these are obviously not clothes that I’d wear outside the house normally… (The ones I’m currently wearing)… but I hurt so bad that the thought of changing again into anything but these ratty old pants is making me sick and cry. 😦
I HATE NIGHTS AND DAYS LIKE THIS!!! 😦

I’m going to share a link to a blog post that really touched me today (thanks go to Sonja for sharing it with me)….This post ( When I’m understood I’m healed needs to be read by everyone, it is incredible.

My wonderful husband is currently working on the final touches that I want done to get the blog ready for unveiling (a couple of addons I wanted and was unsure how to get until he just showed me, because I was trying to do it the complicated way). The new location is centralhive.com/autoimmunelife and it should be that for quite some time so we don’t go through me moving again. Centralhive is a domain we pay for every year and it’s just been sitting around gathering dust, so we decided we might as well put it to some sort of use. 🙂

E and I have an incredible relationship. There are a lot of factors for this including good communication, having been friends for quite awhile before we changed our relationship, and continuing our friendship. Another (major) factor for this is also that he knew what he was (more or less) getting into with my health issues before we were together (other than the lupus, though we knew it was possible I’d end up with it due to symptoms and such) and I knew about his hip issue, that not in depth … I’ve learned a lot more about the whole situation there in the last year or so than I knew before that time period.
We also both deal with chronic pain, so we are more understanding towards each other if we hear “I’m too tired to do it right now” because we both know how draining the pain can be, as well as “I hurt way too much to move/talk/sleep/whatever” since we know how intense the pain can be. We may not know exactly how the other person’s pain feels, but we know how our own pain affects us and we can draw from that to help each other, and to understand each other. The issue is that at times the pain gets so bad for both of us at the same time we end up snapping at each other and getting angry because we can’t communicate (though we do realize why it’s happening, and talk about it later) which ends up stressing us out more than the pain is already doing. Another downside is that some days it’s rough getting the house cleaned or any good food made because we are both hurting. Thankfully this didn’t happen when the kids were with us, and Gamer is old enough that when it was just me awake and I was hurting a lot he would make sandwiches or get cereal for him and Duckling. Also the kids were very excited to help clean up around the house, so things were taken care of during a time that I had a rough time… the storms really got me, plus I don’t sleep as well at night as I do during the day, and I was sleeping more lightly in case the kids needed me. But anyway, this post is about E and I lol! It has made a huge difference in our marriage, and our attitudes towards and treatment of each other that we both have chronic pain. This is in comparison to my first marriage, in which I was the only one with chronic pain, and I hadn’t been diagnosed with anything yet, so it was a double whammy … especially once I was diagnosed with so many illnesses. It is fascinating how much of a difference things can make, between having been friends before anything else, having seen each other sick before hand, and knowing most of what was wrong with me, so there weren’t surprises so much as just some more difficulties added on. It’s nice to see that maybe a marriage can survive all of this. I just wish we didn’t both have to deal with chronic pain, it’s so hard to watch him be in pain, especially when my pain levels are up a lot and I can’t help him out. However, it’s nice to know that we both understand each other and can deal with what’s going on with the other.