My Autoimmune Life

Or as our son says (and would probably say if he were he here with us and saw the title of this post) “Am I in Mario Land?” (because he LOVES mario games, and makes art of all sorts of Mario characters)..

Hopefully my hands are up to this task! I have other posts running around still, this is the one that is pushing to get out, so I guess I’d better let it.

This isn’t a complaint, rather the opposite in fact, it’s just surprising and amazing and incredible to me.

My friends are once again showing how incredible they are. This is not to say they aren’t always incredible, but a couple of friends have recently touched me in ways I can’t begin to describe. A lot of the people who actively chat with me over my facebook page or who keep in touch with me in other ways or read my blog or what have you are kindred spirits in the health/IF realm. Not all of them are, but a lot are. So they understand what I’m talking about, even if they don’t feel exactly how I do physically or about things, they generally have experienced similar things. My friends who haven’t faced these struggles (especially IF, where there are a TON of acronyms and things to get confused on) get left behind a lot with the conversations. One friend has been awesome about asking questions, both about the situation, about what we are thinking of doing if the current treatment plan doesn’t work out, about adoption, etc, and really listening and wanting to learn! Another friend sent me a message last night letting me know that she is seriously considering being an egg donor. With it being National Infertility Awareness Week, and with my struggles, she thought I’d like to know. I’ve shared links to other infertiles blogs, and shared my own story on facebook (semi-extensively) and it’s nice to see that this is becoming a more talked about topic, and that people who aren’t “one of us” want to know more and help. I’ve also had a couple of friends who have offered to be surrogates for me if it were to come to that (and if we had the money and so on)…. it’s been incredible.

Ladies (and gentlemen though you haven’t been very vocal) I want to thank you all so much for all the support, all the questions asked, all the interest in learning about all of this that you have given! It means the world to me, and to others out there dealing with fertility issues I’m sure!

I am in the middle of a lupus flare right now, my joints are especially affected, so although I have a bunch of posts running around in my head they won’t be posted right now. Hopefully I can at least get my What IF done before NIAW (National Infertility Awareness Week) is over, but we’ll see.

• Lupus joint and muscle pain, not sure how active I'll be. :/ #

Powered by Twitter Tools

The OPKs and I didn’t get along, I’m just trusting my body on when I ovulate, because then I *actually* know. I’m not sure if it’s because they want specific temp pee and I never got it exact or if there’s something else, but the day I had EWCM (egg white cervical mucus – a sign of ovulation) although the line was darker than it had been, it was still negative according to the packet. Ok… I am adding to this paragraph a couple hours after I first typed it up because some other thoughts came to mind about what it could have been. The test strips I used say to test with any urine. I was doing them after Johnny got off work, whether I’d been up all night, or if I had gotten between 3 and 6 hours of sleep before that time (which has been more likely this cycle). I read somewhere before even starting the tests that a recommendation was to wait until you had been up for 4 hours or so before testing… I wonder if I would have had better results doing it that way. Either way I’m done with them. I think I’ll just listen to my body as it makes it pretty obvious when I ovulate.
So I’m in the 2WW now. And although the fact my last three pregnancies have all been a few months between, I feel good that we gave this cycle a good chance, even if nothing happens. Unfortunately Johnny had a stomach bug or was made ill by something he ate the day before I ovulated, and I was pretty sick the day of, but I’m still pretty confident that if my body cooperates this cycle has a good chance. So we shall see what happens, I’ve got about a week and a half or so to go.
Another sign I ovulated is that I’ve now got a bunch of ovary pain. I had some pain the day I ovulated, then it didn’t hurt as bad, I wasn’t comfortable, but I wasn’t crying or nauseated from the pain. I woke up this morning feeling like I have a cyst going again. I’m going to guess it’s either remnants from ovulation or it’s related to… corpus luteum (I think that’s the right words) and the 2WW where my body is getting ready in case there is a pregnancy on the way. I know last June I was pregnant and had a cyst, and that was the conclusion that was come to for why it happened. We shall see what happens on both the cyst front and the baby front.
I think I have some other things I wanted to post about, but I need to go get a prescription from the pharmacy, and they need their own posts….

• RT @InfertileNaomi: In honor of #infertility week, check my blog on Monday- running a contest to giveaway FREE pregnancy tests. Really! #
• Cool! RT @melstew87: i should be getting a call from my dr today about surgery! #
• LOL! RT @perpetualspiral: Video: Dramatic Cat – as hilarious as dramatic prairie dog (via drwatsondotexe) http://tumblr.com/x458zk62q #
• RT @jasminepw: Hope it goes to sum1 disabled, chronic ill w high med costs RT @SuzeOrmanShow I get to give away $10K instant emergency fund. #
• RT @MtnRoseHerbs: Cold remedy treats, vegan body cream, healing salves, tea blends, herby lip balm, & more recipes! http://bit.ly/ckNIi8 #
• (tweeting it now, was on facebook) RT @sonjathegreat: via @autoimmunelife: Top 10 reasons to date a female gamer http://bit.ly/dksk4L #
• And in parody of the last article I tweeted – 10 reasons NOT to date a gamer girl! http://bit.ly/bvpRmA #
• That sounds tasty! But I like breathing. (allergy) RT @KeertanaA: I now have a new definition of perfection: lavender lemonade. Oh. My. God. #
• RT @Rebecca1120: RT @stirrupqueen: The second part of Project IF is up: http://bit.ly/cQf7HP #projectIF #
• RT @BustedKate: Got a new post up! It's Time To Come Out of the (Infertility) Closest http://bit.ly/97MfUY Please RT #
• @perpetualspiral I'm glad that at least you aren't suffering today! Sorry to hear about last night in reply to perpetualspiral #
• @Gille01 thinking of you…. haven't seen you around today! #
• @Gille01 Ah ok. I'm back on solid foods!!!! Without it causing bowel cramps or nausea! in reply to Gille01 #
• @lupuschick @sonjathegreat Thanks for the FollowFridays! #
• RT @ababy4al: New blog post, Ectopic Aftermath: http://ababy4al.blogspot.com/2010/04/aftermath.html #
• @Gille01 No they aren't! in reply to Gille01 #
• Precisely RT @lupuschick: RT @yellowgirltaz So my hairdresser says she doesn't lk braids cuz they break yr hair.. (cont) http://tl.gd/109835 #
• @bebe_blazfemi URGH! Well on top of that some people with lupus never get a + ANA, and some docs won't dx without it. in reply to bebe_blazfemi #
• @bebe_blazfemi I hope you can get some answers! in reply to bebe_blazfemi #
• RT @wilw: Everyone relax. Facebook will come back online as soon as they're done destroying what's left of your privacy to make more money. #
• Sorry to everyone's great tweets… I'm not going to try to catch up, I'm a couple hours behind now…. #
• RT @giasrose: 12-Year-Old Saudi Girl Wins Divorce From 80-Year-Old Husband AOL News: http://bit.ly/bavYp7 <<<how sick and disgusting #
• @accustomedchaos ((hugs)) #babyloss #miscarriage #moms #pregnancy in reply to AccustomedChaos #
• Approaching what would have been my duedate if I hadn't had the second #miscarriage last year…. something like 2 or 3 weeks to go… :/ #
• RT @sonjathegreat: RT @SomedayBabyT: don't forget to tweet #infertility on Monday!!!!! #
• RT @sonjathegreat: #Infertility and the new health bill: http://bit.ly/d4SKln (abc news link) (don't read the comments!!!) #
• RT @TheFertilityDrs: Get ready…..and join us on Monday and make #infertility a top trending topic!!! we can do it! #
• @giasrose Yw in reply to giasrose #
• @simoneabuzz Thanks… I got past one in Feb, now to make it past this one… :/ in reply to simoneabuzz #
• Thanks all for the follow fridays! #
• RT @simoneabuzz: Miscarriage and Mother's Day http://bit.ly/cS6Egq#miscarriage #stillbirth #
• @sifinalaska Sif – I like fish and won't go near Tilapia… so….. >.> I don't blame you on saying no to that one. in reply to sifinalaska #
• RT @TiffanyAndLupus: #Lupus is believed to be caused by genetic & environmental factors. Like sunlight,or hormones, etc. Be #AgainstLupus #
• RT @TiffanyAndLupus: Many ppl suffer from #Lupus for months or years w/o proper diagnosis. Symptoms are often mistaken for other illnesses. #
• @TiffanyAndLupus No 1 in my family has #Lupus but Autoimmune diseases run in 1 side of fam & they can group together, so that's the suspect in reply to TiffanyAndLupus #

Powered by Twitter Tools

Also known as “Love, Sex, and Chronic Illness” (Thanks for that title Sonja)

So Sonja, Johnny and I had a conversation a couple of ours ago that Sonja and I decided should be a blog post… I can’t take credit for the whole post, it was a threeway effort!

I’m just going to copy and paste our conversation… when it’s one of the things I said and I have quotes around it that means it’s something Johnny said that I typed for him.

Oh, something I need to explain before I share the conversation – the reason we tease Johnny about having an “endo fetish” is because Duckling and Gamer’s mom has endo and obviously so do I. And the reason he joked about a sickie fetish is because the ex between Duckling and Gamer’s mom and him ending up with me isn’t healthy either. I suspect endometriosis (she was a friend of mine, as well as my ex sister in law, so I know about her issues, and the fact that it runs in her family) but no one actually knows what was going on with her, and she also just isn’t the healthiest girl ever…

Sonja says:
i think my boobs are getting bigger
(.)(.) are now ( . ) ( . )
lol

Jenny says:
LOL!

Sonja says:
alex was weirded out

Jenny says:
mine have been too, but not that much

Sonja says:
after my shower i was like “do they look bigger to you?”
wtf mom? ewwwwwww

Jenny says:
LOL!!!
Johnny says the breast fairy visited while you were sleeping and gave you an enlargement
and “The only thing the cat worries about is if tuna comes out of them”

Sonja says:
LOL!
and you’re ok with Johnny thinking about my tits?
that’s right!
my endo is back!
it’s his fetish!

Jenny says:
He’s shaking his head at you
“Must be huh?”

Sonja says:
hehehehe
i’m horrible

Jenny says:
yes

Jenny says:
I’m now teasing him about his endo fetish

Sonja says:
lol

Jenny says:
he said “no, it must be a sicky fetish” and we’re joking back and forth

Sonja says:
lol

Jenny says:
of course I had to make sure he knows I’m teasing him too

Sonja says:
yeah

Jenny says:
that could be one hell of a sensitive topic
I know it’s not, but it could be

Sonja says:
S&M in your guys’ case stans for sick and medicated
right

Jenny says:
LOL!
I’m eating, my mouth is full I can’t read it to him right now (mac and cheese)

Sonja says:
awww

Jenny says:
“Indeed”
I started laughing and couldn’t explain

Sonja says:
lol

Jenny says:
“And the b&d would be bedded and disoriented?”

Sonja says:
LOL yep!
lol jeez

Jenny says:
maybe I should turn on the webcam and we can all discuss this lol

Sonja says:
lol oh god no

Jenny says:
LOL!

Sonja says:
i can’t get hot and bothered yet
i’m thinking this could be a great blog post for you tho

Jenny says:
“That’s horrible”
and I am thinking so!

Sonja says:
and yes, it is horrible
lortab def makes me a little more demented. like my filters are just gone lol

Jenny says:
LOL!
I know the feeling!

Sonja says:
“Love, Sex, and Chronic Illness” or something
i’d totally link to it too

Jenny says:
LOL! I was going with I love my husband and friends (because I was going to mention a conversation with sara as well)

Sonja says:
that works too!

Jenny says:
But I like your title better since I can’t find the one with sara

Sonja says:
ah
if we don’t laugh, we cry right?

A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. – Eleanor Roosevelt

I like this quote, which one of my aunt’s posted as a facebook status last night, and which inspired me to write this. I know a lot of really strong women, and they’ve gone through a lot of really hot water that has made them show that strength. A lot of my friends say I’m a strong woman too… and although my feeling is that I”m just playing with the hand I was dealt and living the best I can, I suppose if I were watching someone else walk my life I’d call them strong, so looking at it that way I guess I can agree that I’m strong.

A few weeks ago (I think that’s the timeline) a friend and I were discussing one of the photos I still have from my wedding with my ex husband.

The above photo is the one being discussed. It’s a (now deceased) family friend and I, who I used to be a parttime caregiver for. I would go to his house between college classes a couple days a week and make sure he had enough water, if he needed food I’d prepare it for him and give it to him, we’d sit and watch tv together, etc. The friend I was discussing it with commented that I looked really happy and healthy in the photo. I then mentioned that none of my diagnoses were made (other than the allergies I had at the time) until after that period in time. At that point she said something about how hard it must be to deal with all of it coming on so quickly… which led to me making the list of all of the diagnoses in the past 5 years that I’m about to share.

I was diagnosed with endo Nov. 2005, Fibro and my vulvar and vaginal issues in Dec. 2006, the bladder condition (IC/Interstitial Cystitis) in Jan. 2007, I was told I’d end up with lupus (due to already having signs, just not enough of the diagnostic criteria was met yet) in March or April 2007, and diagnosed with lupus tentatively in Nov. 2008, and positively in Dec. 2008.

That seems like a lot of hot water. I’d also like to say that I have had allergies since I was a child, I had asthma as a teen (which is now in remission and has been for the past 7 years almost, but is still certainly there under the surface) and I have dealt with becoming ill more easily than most for a long time (stupid autoimmune issues). Also – 4 miscarriages in 2ish years. That’s just the health and health related stuff too, it doesn’t include the stuff that has happened in my personal life (some messes I got myself into as a teen, some messes with my parents, sexual harassment (or was it abuse or somewhere in between? I don’t know how to define it, although marital rape is a good word for at least some of it) and verbal abuse from my ex, leaving my ex, and so on)…. but each thing has made me stronger. That’s part of why I say I wouldn’t change any of it. Oh there has been a lot of stuff I’d never want to go through again… but it’s made me.. well.. me. And it’s made me strong. The fact it’s made me strong and I know I can survive, and have more of a fighting spirit towards adversity than I ever expected is part of why I’m …. why I wouldn’t change it. I can’t say I’m glad to have gone through all of it, but I’m glad for how it has shaped me. That water has been very hot, but it’s also made me a stronger person, and in some ways (though I realize I can be very bitter) it’s made me a sweeter person as well, in that I am more compassionate towards others than I think I ever could have been without going through this stuff.