Grrr….. so I hate the thought of cutting people out of my life. I want to say that first and foremost. There are a lot of reasons I feel that way, including if I were to cut out everyone who ever irritates me I’d be pretty damn lonely and I know it. However, I also know I need to take care of me, and the stress some people bring just makes me worse. There are some people who either never seem to know the right thing to say or who just don’t even try. I realize I’m not going to have everyone’s support 100% of the time. I also realize that I need to try not to complain too much, I also realize people have other things going on in their lives. However, getting angry at me when I express that I’m hurting, or when I’m not cheery 100% of the time… that’s a bit ridiculous. I’ve been trying to stay positive, even while throwing up from the pain and getting very little relief from my pain pills… but I can’t control my attitude 100% of the time… and when I’m in pain and/or tired it’s even harder. And all of this pain also has the pain from the miscarriage tied up in it, because although the lupus pain may not be tied to the hormones, you can bet the endo pain (and the fact my endo is definitely worse) is directly related to my miscarriages. Lately I’ve done a pretty good job staying positive in spite of everything. And there are a lot of other things going on in our personal life that I can’t go into on here. So I’d say I’ve done an extremely good job with handling things… though I know a lot of it hasn’t shown on my blog, as it’s been spur of the moment comments and such on social media sites that I update a lot more often. I guess basically I’m tired of being torn down each time something happens and I stop being quite so happy. Over all I’m still managing to stay positive, if more whiny. There are just some people who rub me the wrong way, and who I rub the wrong way, which is a big part of the problem… we overreact to each other. And we either need to figure out how to stop overreacting or else I need to cut them out of my life. But that is such a hard thing for me, for multiple reasons, including that I don’t have any close friends (other than E) in this area, I cherish the friends I do have even if we don’t do the best job communicating all the time, and I’m really sentimental about the people in my life… I still miss friends I knew in Kindergarten and who I haven’t seen since elementary school. I also believe in second (and third, and so on) chances, though I know my ex husband would try to tell you differently. I hope people will change, and keep hoping. Or that they’ll start to understand, which I guess is what I was trying to say with the hoping people will change. Some of these people seem understanding, but then out of nowhere it’s like their whole attitude and all the compassion just go out the window. And the worst part about it is when they are people who have been there, but suddenly your (emotional/physical/mental) pain is less than theirs. Of course, I know I can act the same way sometimes (especially with the pain thing) so I try to give more chances because maybe it was just a bad day or whatever else. But it just reaches a point where it gets too exhausting, and where things are obviously just getting worse and worse. And at that point I still have to fight myself over whether or not to cut the people out, which seems ridiculous because obviously they are just making the situations, and my health, even worse. So I’m really struggling here about a couple different people as far as what I should even do. And I know no one can tell me what to do, but maybe some stories of how others have dealt with these (general) situations would help? I know two people I’ve talked to, who have been in my shoes, have told me to cut the people out of my life, and that it made their lives better when they did, even if it was painful for awhile. I just keep hoping these people will suddenly realize how they are acting though. 😦

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I’ve been… reconnecting with some friends recently.  Some friends I’ve not kept in contact with very well (though that applies to basically everyone in my life I suppose, an issue of having all the health problems and living in a completely different state and time zone), partially due to my health, and partially because of how life gets. 
One of my friends reacted to my health in a way I would never have expected, partially due to how our conversations have gone in the past.  It  was very nice to have the offer to call any time I need or want to talk, especially with how busy said friends life is.  She and I had a very frank conversation about how some of the issues with my health have been affecting me, and I think she understands why I seem so distant at times a bit better now. 
Another friend and I haven’t kept in close contact, I’m  not sure why.  We’ve had our close moments, we’ve also had a lot of time where we have kept in touch but we just would message each other out of the blue, it wasn’t a steady or extremely close friendship, as the friendship I mentioned before has been on and off for years.  She saw a message I sent out crying about my hair, and replied to me, and we’ve been talking back and forth since.  As I said we haven’t been close, so it surprised me to get the message from  her, but at the same time, she’s one of the most caring people I know, so I’m not surprised. 
It’s been nice to get the support, and to be able to open up a bit more with some people who haven’t been as involved with my health. 
I also called and spoke with my mom earlier, and had a great conversation, she helped me out a lot.  We have had… a rocky relationship at some times (and what mother and daughter haven’t?!) but I can still call her and talk to her when I need to, even if it’s while she’s at her office working, and I’m crying about my hair.  After I told her what was going on, and how upset I was about it, she said she’d call me back, she was going to call her hair dresser and ask her for suggestions.  When Mom called back, not only had she called her hair dresser (who gave a suggestion on a brand of shampoo and conditioner) but she had called the local health food store and gave me some ideas from them.  It was great to have that support over the phone, it was also nice to receive the help and suggestions.  On top of that, she could sympathize, as she’s going through some of this as well. 
E has unfortunately been sick, and on top of that he was supposed to work tonight, so I wanted to let him sleep when that stuff happened, but when he woke up enough to talk, he gave me a huge hug and helped me a lot, not that his actions are out of the ordinary (other than the being sick and not being able to go to work) but it just reminded me of how much he means to me and how much I appreciate him. 
Another of my friends who I’ve had some contact with over the last couple months and I had a …. misunderstanding.  It has since been cleared up (I hope at least – are we clear Shadow?  I think you read this) and although we haven’t been able to talk since the clear up due to how I’ve been, she has been amazing since realizing just how much she didn’t know about what was going on with me, and about helping.  I just wish we’d have a chance to talk more again soon.  I know I can call her any time, but… it’s hard to do so, knowing she’s got the job she does and I never know quite when she’ll be home, or awake, or not working. 
I think (and hope) I’m starting to find that balance of letting people know what’s going on with me, but not letting it be my only focus (other than here and with specific people with whom it’s the normal topic of conversation) in conversation, or otherwise.  Hopefully I continue to remember this balance, and fine tune it more, as I don’t want to be “that sick girl” or something, but I want (and  probably need) people to know what’s going on with me, so that there is an understanding of my life, and why I may be distant, or that sort of thing. 

It was cool the other day, after my last post of the day (Exhausted) one of our neighbors and friends called over and said “J, I made some stir fry, it’s just made with stuff I’ve had lying around the kitchen but you are welcome to some if you’d like.”  So I grabbed a bowl and went over.  The unfortunate part was that she has a 4 month (or so) old puppy, and this puppy likes to jump on people still, especially if you are carrying something, because she’s very curious.  Well, to get her to stop, we stick our knee up on which ever leg she’s jumping up, in order to put some pressure on her and show her to stop, it’s not painful, but she gets the point that you don’t want her to be up on you.  Of course a minute later she’s doing it again.  So I was continuously using my knees to get her to stop.  My knees are one of the areas that have lupus arthritis, so that wasn’t fun.  By the time I got home, not only was the lupus arthritis flaring in those joints, but my leg muscles were aching, from me knees to my hips, and my legs felt extremely heavy.  I did have a nice visit with our neighbor though, and we got some food, so it was well worth it.  Just means I slept a bit more last night than I usually do.

Now to pick up where my last post left me.  After taking my amitriptyline yesterday and going to bed, I slept for about 8 hours straight, the alarm finally actually got through my brain 30 minutes after it started going off (I had pushed the snooze button 3 times without realizing it), and I woke up a bit.  20 minutes after starting to wake up I turned off the alarm (10 minutes earlier than I usually do), got E his clothes, and climbed back in bed for cuddles.  (those cuddles, one of the most important “treatments” for me.  I don’t see them as a medical treatment, and neither does E, but they definitely have an effect on my pain and on me relaxing).  At 930 I looked at the alarm and told E the time, he said something about “oh good, we have time for more cuddles” … so I curled back up with him until it was time for him to actually get dressed and ready for work.  When he got up, so did I, I checked my email and the blogs I follow, checked some other sites I’m on, and said goodbye the way we always do to him when he left.

After he went to work, I went back to bed, and was still there til he got home for lunch.  I was freezing.  I think I might be dealing with fevers with my lupus… though no thermometer to tell.   It seemed to have broken when he woke me when he came home for lunch (I was about half asleep again at that point).  Still seems to be broken, since I have no fever aches (there is enough of a difference between them and my fibro that I can usually kinda tell, but it’s not a big difference), my forehead is still cool, and my eyes aren’t feeling like there are fires behind them.  (The last few years when I get fevers I feel like the backs of my eyeballs are on fire, or at least very warm).  I’m also not cold anymore, I’m comfy sitting here in a tshirt, pj pants (my Monty Python ones, thanks Ja!) and socks.  If I’m actually doing feverish stuff, it always seems to be broken by this time of the morning, and starts back up a couple hours before bed, …. so I don’t really know if I’m having fevers or not.

After I finally got up, I sat at my computer and played some WoW, talked to some family friends, mainly a friend I’ll call Wolfie for the purposes of this blog.  When my right fingers and wrist got achy, I decided it was time to read some more blogs, so I looked at friends blogrolls, found some new blogs to look at, and sat back and read… nice and easy on the joints lol.  The conversation with Wolfie was very nice, as we talked about all sorts of things, what’s new with each of us in our respective jobs and lives, and him asking questions about lupus.  He was very concerned that his asking questions would be rude or that he would insult me, to which I replied that asking stupid questions or making stupid comments “Are you pregnant?” or “But you don’t look sick.” is what I find to be insulting.  I see my illnesses as a blessing, for this simple reason: I get to educate people on what they are, and on the effect that they can have on a person’s life.  I want people to ask questions, because if I don’t have an answer, I will look for one for them, and for myself.  When people ask questions, whether it’s just a simple “how are you today?” or a more difficult (due to complexity) “what is lupus” it shows that they care about me, or at the very least are curious as to this illness that I am sick with, and why some days I can do anything (well… it feels like it at least) and others I’m stuck in bed all day.

Now I am typing this.  In a little bit E will be home and we’ll either hop back on wow or watch something.  At some point when I feel the house is warm enough that I won’t freeze transitioning from the shower to getting dressed, I’ll take a shower, and that will more than likely be the end of my activity for the day.

So I thought I should post an explanation of who the people you see mentioned in my journal are, especially since those I call by something other than Mom or Dad, or the like will have a letter representing who they are. They are also the biggest members of my support team.  Fellow bloggers may join this list at some point as well, and one of them will be mentioned at the end of this list tonight.

Me – As my profile says I’m a 23 y/o female.  I like with several chronic conditions and deal with them daily.  They affect many parts of my life.

E – My husband, my best friend, and someone who I love very very much.

M – My cat, who brings a lot of joy into my life, and who helps me in many ways, even if he doesn’t actually do anything physically for me like a seeing eye dog or something like that.  He is always around, even if he’s not in the room with me, and when I lay down, unless he’s asleep, he will come to me when I call his name and usually lays with me for awhile (if E isn’t in bed as well).

Ja – My younger sister

Jo – My soon to be brother-in-law

Mother or my mom – My mom, who also deals with some of these illnesses, and with who I pass information back and forth.

Mom D – My mother-in-law, who lives in the next town over and is a nurse.

Dad or Daddy – My dad, somone who is a great inspiration to me, and a huge support.

O – my father-in-law, E’s step father

Nb- My youngest sister in law, E’s half sister

Ab – My oldest sister in law, E’s step sister, and still younger than me

Wolfie – A guy I’ve known my whole life, our dad’s have been friends since elementary school.  We are a lot alike, and we are also like siblings in some respects, though our relationship is more like that of cousins.

Jeanne – the writer of Jeanne’s Endo Blog, http://endendoat.blogspot.com/, and someone who I email with and comment back and forth with.  She is becoming a friend, and is also a sort of mentor to me with this whole blogging thing.

E, M and Jeanne are probably the three who will be mentioned most in my blog, though time will tell how true that is.  I’m sure E will be in here at least in casual mention fairly frequently.