My Autoimmune Life

I believe I’ve mentioned before that E comes home for his lunches, to spend time with me, and that way he doesn’t have to try to find food to take to work with him or spend extra money on lunches there.
It’s nice to get to see him every night on his lunch, and it means that I can nap again between his break and his lunch if I want to (I try to talk to him on all of his breaks, even if it’s just to say hi), and when he gets home he’ll wake me up.
Well after I dragged myself back out of bed tonight (on his lunch) and made it back to my computer M sat with me for a bit, then went and made himself comfy on the entertainment center/tv stand. He did this about 5 minutes before E had to leave again. So when E got up to leave, M looked sad, so E waved at him and said “bye” and tried to get M to follow him to the front door (M normally races to beat E to the front door), but M just put a stricken look on his face and stayed there. (Note that I’m tired – I tried to make a new word in that sentence… looken.) Well I did my normal goodbye with E (a hug, a kiss and an I love you), after which he realized he didn’t have the keys in his pocket, so he went to grab them, and I stepped between him and the door on his way out. He hugged and kissed me again, and I stepped out of the way so he could go. About this time, M comes sauntering down the hall, and sits at the end, just in view, looking at E. So E went to give him attention before leaving, and M started running back down the hall partway, trying to get E following. E turned back around to leave, at which pointed I intercepted him again for another goodbye. And the whole thing has me chuckling!

Would you? Well I did… I now have a twitter account to go with this blog and my life as an autoimmune patient.

So here I am…. who knows how often I’ll update it, we’ll see… but it’s there at least.

So Foxy tagged me to share 6 things that make me smile….

1) E – He can almost always succeed at making my smile, even when I’m annoyed with him. E is an incredible (though far from perfect) man, I wish I knew how to express the feelings I have for him.  He knows how to make me laugh through my tears, my pain, my annoyance… I just hope I’m even half as good at doing so for him as he is for me.  We’ve had some pretty good jokes over the last few years since we met.  One story I must share…. on his last weekend (Monday and Tuesday last week) we were watching a movie and it was set back in … I think it was the 50′s… though I could be wrong.  Anyway, there was one point where this male singer got on stage, and the women in the room did that whole sigh thing that women supposedly do when someone famous who they are attracted to comes into view…. well a minute or so later I exaggerated their sigh so much it got E laughing really hard.  We went back and forth through the movie (a couple times) doing stuff to make each other laugh while watching it, because some things it was just like… who actually does this stuff?  It was very nice to be laughing.

2) M – my cat can be a real pain at times, he’s very mischievous at times, but he knows when I’m hurting or upset and he will come over and start cuddling me and licking me and such.  When I’m at my computer he’ll come sit on my lap and (although it can be irritating if I’m trying to do something “important” he’ll get between my keyboard and I, or my mouse and I, and just demand attention.  One of my favorite things though, is how he’ll lay on my chest when I’m on my back… he covers me… he’s a big cat and I’m not a big … woman (am I really a woman?  I feel like a little girl too often, and not in a good way), so it’s like having a warm, fuzzy blanket on my chest.  He’ll lay there and push his head into my hands, and start licking my chin or whatever he can reach to show me he loves me too (or give me a bath – not sure which)

3) Talking to and having a relationship with my mom.  We still don’t have a great relationship, but we actually talk anywhere between every few days to once a week or so.  I enjoy getting to talk to her when I do. 

4) Family – even though I have done things that have hurt my family, and they have done things that have hurt me, and even though we don’t have the best communication at all times… my family makes me smile.  I have a photo directory on my computer that is only family members…. when I start feeling too down, or missing them too much (I’m in a completely different time zone from them, and at least a couple states from everyone who isn’t a great aunt or a second cousin or further removed) I look through that folder, and think about the good times.  And sometimes even the not so good times, because I feel so blessed to have been able to have the time with them in person that I have, and I feel so grateful that they are still involved in my life as much as they are (some are much more involved than others.) 

5) My little town… well…. little city?  It’s bigger than a town, but it’s not huge.  I complain at times, especially about the lack of opportunity for school or work… there is a school locally, but it’s a bit more of a distance than I desire to do in the snow, and not all of the classes I’d need for general ed are available… I’d have to go to the college it’s connected to (an hour away on a good weather and traffic day) to get the other classes… and with the snow that’s just not a possibility, even if we could afford the gas, tires and brakes (there are some decent sized grades to go up and down, and it’s a distance from us)…. so those are my frustrations here.  But I love it, I love that even though it’s not completely tiny, you can still get that tiny town feel.  Especially in the part of town we live in…. We’re not far from main street, and this part of main street still has a lot of old shops and such in it, and it’s just cozy feeling.  We even have an ice cream parlor just… well in normal city blocks it’s just like 3 blocks or so from us… though if you go by streets, and the blocks that we have… it’s 10 blocks up lol!  I just love it here, and I like getting to see the old places, and the way it’s mixed with new places.  I definitely like the older looking and feeling part though. 

6) My friends, both the old who have stuck with me on this journey called life, even through the painful turns (leaving my ex, the divorce, all my health issues, me moving out of state, etc), and my new ones both here in my town, and those who I have met online.  They are an incredible support system who I take some of for granted, and people who I have connected with in so many amazing ways.  I’m so grateful for them, I just hope they know it, because I’m not the best at showing it or telling them… especially those who I can only contact by phone. 

Oh… I almost forgot to tag some friends to do this. Lets see…. Sonja, Eve, and anyone else who would like to do this!

So when I wrote So much on my mind… I left out a couple points I meant to include in the why I think I’m having such a rough time with fertility (or my lack thereof)…. I didn’t mean to, but I was tired and following rabbit trails all over the place.

Next reason one: I’m going to be in my mid twenties as of my quickly approaching birthday. Some would call me in my mid twenties at my current age, some wouldn’t. As of this next birthday I’m definitely going to be in my mid twenties.  I always thought I’d be married and have at least a kid or two by this point in my life.  I accomplished the first part of that goal… twice now.  I married as a late teen, and we have since divorced (obviously, if I’m now married to E)… and I’m married again.  However, I have no children.  Children have always been something I desired.  Now if I hadn’t known before I was diagnosed with endo that life wasn’t going to go my way and I don’t always get what I want, that would have been a rude awakening… however, that knowledge doesn’t make the fact that one of my biggest wishes/goals/plans for my life still hasn’t happened any easier.  It feels like life, the universe, God, Satan, who or whatever have just taken my dreams and goals and thrown them on the ground and stomped all over them.  Now, some of my dreams I’ve been the one who has been counter productive to, such as going to school… others… like getting the degree I want which is no longer an option at this point due to my health (my fingers hurt too much and my hearing is not the greatest), and kids – I’ve had no choice or option on.  And that I think is one of the hardest parts of all of this… the fact that I have no control over this part of my life.  Surgery for my endo could potentially help, but we don’t have the money for it, I’m uninsured, and the doctor I want to do my surgery probably won’t do it with me having no insurance.  Even if he does, I still owe money from my last surgery…. it’s going to be at least another 6 months before it’s all paid off.  Infertility drugs and IVF are an option, but since they involve hormones, and even me going on a low dose birth control isn’t an option right now, so I doubt those would be allowed, even if we had the money and I were willing to take those drugs (there are some higher cancer rates with them, as well as other serious side effects)… So, I don’t really have control over this situation at all. 

Next reason two: …. The media coverage of a pregnancy right now. Luckily I can avoid most of it, as we don’t watch tv, and I follow news through a couple sites that aren’t covering it very much. Unfortunately, it’s big enough news to still be leaking into other blogs, and that I can’t avoid it entirely anyway. I feel…. Well, I feel that this post by Eve sums it up well. Especially reasons 1, 2, 5, 6, and 10!

Next reason three: The coverage of a pregnancy on one of E’s and my favorite shows, Battlestar Galactica. During the last episode the father of the baby went back to the room they have, and the mother woke up and told him the baby had started moving. There was a scene focusing on him feeling her stomach trying to feel the baby moving, and I’m not sure what else happened because I couldn’t watch anymore… my heart felt like someone was stabbing it. Very few episodes that have included the pregnancy have bugged me as badly as this one… but I felt like someone had torn my heart out of my chest during this part.

I almost think the three reasons here are the biggest reasons for why this is affecting me so badly… and I hope soon I’ll be past all of this so that I can get on with my life… not that my life is much other than home right now, but I’m sick of having everything hurt me so badly, and I’m sick of wondering what’s going to set me off next. I go through this every couple months now…. and it’s really getting old!!!

(Note to Foxy: I will get to the entry you tagged me for soon, I wanted to get this finished up first, since it’s been sitting waiting to be finished for a couple days now.)

Well, I’m getting ready to start my period finally… after over a week (GRRR!!!) of PMS…. I just hope it starts soon.  At the same time I’m frustrated though…. I had my period the day after Thanksgiving (that made me wonderful company on Thanksgiving I’m sure….>.>), Christmas Day (luckily we celebrated Christmas with family on Christmas Eve), E’s birthday, and now it should start Valentine’s Day or the day after……. I’m scared to look and see what else my period is going F*** with if it stays on this cycle.  It’s been pretty steady around 26-28 days since my first period after going off birth control, so unless I manage to get pregnant I’m not sure that’ll change right away…. the first time I went on birth control I was only on it a couple months (I got HORRIBLE migraines from it, among other side effects – I will NEVER go on Ortho Tri Cyclen again if I can go back on birth control) and I was able to have pretty regular periods for…. I think 3 years or so… regular as in  cycle, not as in pain. 
What else is going on with me…..
Hmmm…. My plaq seems to be helping somewhat, though I still have over a month til I can expect it to be in full effectiveness, hopefully it gets there before that point.  Storms cause me to flare still, though the flares differ storm to storm, and I’m not sure the plaq will ever help with that, though we’ll see what happens.
I’ve had a nasty headache the last couple days, so I’m pretty convinced my period will be soon, though I was guessing it would start last night sometime… so I seem to just be  having worse than average pms this month, I hope it stops soon, this is pretty miserable. 
M has really started accepting E, so that helps brighten my days even more. 
E brought new toys home for M the other night, they were brand new and going to be thrown away, so he “rescued” them.  M has been playing with them anytime he’s awake and not being lazy or cuddly.  He’s been more active again since getting them too, which is good, he’d gained weight since he was being fed two times a day (I didn’t realize that or I would have cut his food in half…….. E was feeding him every morning also…. I now tease  him about sneaking M food when I am wondering if he’s fed him again or not… and the answer is no, since I realized and made a fuss about it he’s stopped)… and now he’s finally losing it again. 
I think my biggest struggle with this period (at least right now) is the fact I’m getting ready to have one again.  I’m not saying now would be a good time for a baby, the opposite  is true in fact… I ‘m out of work, E’s hours have been cut (well, everyone at Walmart is getting less hours right now, but yah… not everyone’s hours affect E and I), and money is pretty tight just for paying bills we have already…let alone adding expenses to it.  I think we’d end up having to move back in with my in laws if that happened, which would definitely not be a good situation.  I’m still struggling though, I’ve been off birth control for … a few months now (brain not working for figuring out how long) and no pregnancy yet.  We haven’t been “trying” but we also haven’t been… avoiding trying lol.  I think I’m struggling with this more right now for a few reasons, one – I know several women who have been able to “just” get pregnant like it’s no big deal…. in fact a few of the pregnancies have been unplanned, and others, well it just happened right away when they decided they want a baby.  Not all of this is recent, but it just adds up to me being miserable when I’m struggling with this.  Another is that my best female friend has two beautiful boys, both were, for different reasons, surprises.  She and her husband are struggling, and I don’t think they’ve had many good times in the…. 3 1/2 years (I think) that they’ve been together.  He is now trying to pressure her into having another baby, in hopes of a girl.  …. And I’m going to cut off here there is so much I could rant about in that situation…
I know many women who either their period is no big deal,  or they are relieved to get it because they aren’t pregnant then (or at least that’s what they think, since some women still have “periods” throughout pregnancy)… for me, when I was on birth control the only reason my period was a big deal was pain, otherwise, I didn’t care that I was getting them.  Now…. now I struggle each time I get one, because my heart breaks more.  It’s like every month my hope swells, even though I know it’s not a great time at the moment (but I also know we’d make it somehow) and it’s crushed every month when I get my period.  Just because my brain knows all the stuff about chances of a healthy woman getting pregnant any month, and how our circumstances are and everything else…. it doesn’t mean that my heart cares.  My heart just yearns for a child…. I’d love to be able to experience pregnancy, and giving birth (I don’t think it’s going to be pain free or whatever else, I don’t have awesome expectations for it to be the most perfect moment ever, I know it’s going to hurt and be hard) and get to see my baby from birth on…. I am not against adoption, but that doesn’t mean that I don’t want children of my own flesh and blood as well.  The thing that scares me most about getting pregnant, and having bio kids is the risk of passing on anything autoimmune, they may not even end up with the same illnesses I have, my mom and I share two of her 3 illnesses, and we only share two of the whole mess (what am I up to now, 4 or 5?) that I have… I’m not sure I could deal with myself if my kids ended up as sick as me.  I’m also not sure how able to take care of them I’d be… especially since lupus generally flares after birth from what I’ve read… though hopefully I’d be one of the lucky ones whose lupus goes into remission with pregnancy and the flares stay away for awhile.  Would I feel guilty knowing that I passed all of it on knowingly?  Would I be there to support them?  Could I deal with myself?  Would they forgive me?  I just…. struggle.  And the fear of having a daughter… since endo definitely runs in my family (my mother has it, I think my grandmother may have and I do)  … would I be dooming her to worse endo than I have?  It seems to have become progressively worse, at least from my mom to me (the two confirmed cases in my family)… what would I be doing to a daughter?  And although I wouldn’t pass the endo on, (and since my case seems linked to the fact I have endo) I probably wouldn’t pass the IC on, and what I’ve been reading says that lupus usually seems to skip generations, so I wouldn’t be likely to pass that on to my kids (though the related issues are not unheard of being passed on) …. could I deal with having a boy either?  Knowing that I still run the risk of passing on the autoimmune factors… and knowing that endo seems to be just as possible to be passed on from the father’s side of the family (I have read a lot of info, in a few books, and I could probably find it online as well) …. just having a female in the family with endo increases the risk of it being passed on, it doesn’t necessarily have to be the mother’s side that has endo running in it for a daughter to end up with it.  I know, I’m putting the cart before the horse here, since we don’t even know that I can’t get pregnant (though I’d say in …the time I’ve been having sex the fact I haven’t been able to get pregnant points towards struggles with getting pregnant at the least… there was birth control used for about a year and a half with my ex, and up to the last few months with E, but there has still been… well over 2 years between it all that I could (and by all rights should with the ex as far as timing went with some of the sex we  had….. when I actually could, and as far as the last few months with E, there’s no reason I shouldn’t be pregnant by now with our child other than my health issues) have become pregnant at some point.  I haven’t officially been called infertile yet, especially since from what I hear, most doctors say it’s 2 years of trying continuously first?  (though I could be wrong)   But…. I’d say my body is showing that it’s not normal, yet again, with all of this.  Not even so much as a blip on the radar the last few years for a pregnancy…. I’ve convinced myself plenty of times that I was, just to get negative pregnancy tests, and my period (even if it was late)… I’m trying so hard to just let go of all of this, I’m sure I don’t help myself by stressing/struggling with it so much, but …. it’s such a part of me to want to be a mother.  I can’t really think of a time I haven’t wanted to be a mother (other than with the concerns of passing things on.  It’s always been a part of me.  My sister calls me “lil mama” for a reason…. including the way I’ve been a second mom to her for years, once we got past all that sibling rivalry crap. 
Anyway, I need to go back to sleep, I’m tired, but I wanted to at least get some of this off my chest…. Thanks for letting me (not that you had a choice LOL)

Just wanted to wish everyone a Happy Valentine’s Day

So two of the big signs I’m pmsing are emotions (either towards depression or serious anger, though usually depression since i’m off the birth control) and food cravings….
Tonight I decided I wanted a burrito (we have the fixings in the fridge), with sour cream…. I go to the fridge and get the ingredients…… grab the sour cream to put it on… and see mold when I open the container… I’m not even sure why it’s moldy… the fridge is always closed unless we are grabbing food, and we only keep stuff out long enough to get our food made. The moldy sour cream almost had me in tears (I like food, but being disappointed about something not being available or not being good anymore doesn’t usually make me cry), and now I can’t fulfill my whole craving.
Frustration time I guess…..

ETA: I forgot to mention, the sour cream still had over a month on it before it was “supposed” to go bad…. the exp. date is somewhere around the 15 – 20 of March… not quite sure when in those 5 days.