Before I say anything (and I’m guessing that at least to some of my readers this will give away what’s coming) I want to say to any face to face friends or family members who know us in person – if you are reading this news and haven’t heard it from me or Johnny personally please contact us before you get all upset, we have our reasons that this has been kept quiet, so please just let us explain and don’t start contacting other family members or friends to find out if they know, they may end up pissed off too, which is the last thing we need.

IFers and M/C sisters beware, this could be a tough post.

Ok…. the reason for my last post, and for my silence lately is that I’m pregnant. I’m currently almost six weeks along, and have known since the first Tuesday in the month. The last two weeks have been extremely rocky as I have had to go on extra hormones, I had super scary cramping… I also had the “normal” cramping and pelvic twinges and such that are just part and parcel with pregnancy, but I’m talking cramps that had me in tears and felt like the ones I’ve had with my past miscarriages. For those just joining in on the story this is pregnancy number 5 for me, no live births, which means 4 miscarriages so far (I hate having to add so far on there, but even with the treatments I’m still really scared this is going to end badly) and at nearly six weeks this is the longest I’ve ever been pregnant. Three of those miscarriages have happened in the last year – starting the day before Father’s Day last year, then one in October at 5 weeks (the only one I even had a suspicion of pregnancy with, also the longest pregnancy I had before this one), and one in March. The cramping got really bad over the first weekend that I knew I was pregnant (I wasn’t able to start my progesterone suppositories until right before the weekend, a couple days after the positive) and I put myself on bedrest. The following Monday I called my ob’s office and the nurse told me to continue the bedrest until I heard back from my doctor. A couple days later I still hadn’t heard back so I started really bothering the staff to get me an answer, they had another of the ob’s review my case and I was told to go ahead and go off bedrest. I was supposed to up my progesterone, but there just isn’t money right now (I’m working on getting on other insurance) and now that it is in my system more I’m doing better. Then, Saturday or Sunday I started feeling more and more like absolute crap. I think it was Sunday I had some leg pain (one of those side effects they warn you about as it could be a clot) and early Monday morning I started itching around my butt, so I scratched and found that the skin felt really odd, so I had Johnny look at it (this was during his lunch break thankfully) and there was a good sized rash going on. I also had been having some issues urinating, but the retention I was having was listed as a possible side effect, and the pain I was having isn’t unusual (especially since I got brave and tried to drink one of my favorite drinks a day or so before – lemonade) so I hadn’t thought anything of it. Johnny bought a baby “healing creme” for me and has been applying it and the rash looks a lot better, I think we are at the point that we can stop treating it, it’s not itching anymore and although the skin is still a bit discolored (I look bruised) it’s definitely healed up. Due to all of this they switched my progesterone from suppositories to oral, same med and dose just different way of getting it into my body. Hopefully this works and I won’t have to do any more switching of meds. They also told me to “drop by and do a urinalysis” and I replied with something along the lines of there is no dropping by your office… I’m an hour from you guys, so they sent me to our PCP office, which I did Tuesday (yesterday for me) morning when they were able to get me in. Once I got there they gave me a cup and I went and peed in it so they could run the urinalysis… it was pretty obvious to me when I was closing up the cup and putting it in the cubby for the lab that something was up… I won’t go into details, but it was really obvious. Johnny and I both had appointments, so we took care of Johnny’s appointment, after which his doctor looked at the results, said “you have an infection, does your ob want to treat it or should I”… I didn’t know so he gave me a rx (the one he always uses for pregnant women apparently) and I’m to verify with my ob’s office that it is how they want it treated and start on it. So it’s been an eventful pregnancy. When I haven’t been dealing with those things I’ve been pretty happy, but it definitely hasn’t been an easy couple of weeks, and due to my health and miscarriage history we’ve been keeping it pretty quiet…. even with the treatments they are doing (aspirin and extra progesterone) we’re still walking on eggshells and pretty nervous about the whole thing. I have my first prenatal appointment and ultrasound next Thursday, we’ll see what the results are… the u/s tech isn’t entirely sure she’ll be able to see anything at that point, but since I’ll be pretty near 7 weeks she thinks that there is a good chance.

I want to let my readers know I don’t know how much or how little this pregnancy will come up in my blog…. when I’m not sick (like with this infection) although the pregnancy is on my mind it’s not so much a topic of conversation for this blog because my AI issues seem to be in remission. Unfortunately the infection has made my lupus flare a bit more and me feel like crap, but that’s no surprise. I will be doing updates, I’m not sure how frequently. Any pictures will be in password protected posts and labeled so that no one has to see them if they don’t want to, as I know how tough it is to see baby bump pictures when you want one so bad and can’t get there. This is my space and I will post what I need to, but if it does get rough for you to see the posts please let me know in a comment or email and I’ll let you know when non pregnancy posts are up (with a link) so that you don’t have to keep checking my blog and seeing pregnancy news. I am wanting to write about the pregnancy, especially as things change with my health, but I also do know how hard it can be to read and am concerned about how the news will affect the friends I’ve made through this blog. I know on a forum/community I’m on that deals with all sorts of topics and has both fertiles and infertiles there is a pregnancy boom going on and we’ve had a couple of members needing to take a break, which … although I haven’t necessarily forgotten where I’m coming from, has made me think a bit more about what I’m saying… I want to share my happy news, and I do want to give updates in what is a high risk pregnancy situation, but I also don’t want to overwhelm those for whom this is a sensitive topic, so like I said just let me know!

I think that’s all my news for now…. Umm…. I can’t think of anything else for now.

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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.

Sonja and Sara gave me the head’s up about Project IF a couple of days ago, which is also being discussed on SIF’s wonderful blog frog community (sorry about all of the links I just want to share these wonderful ladies and the community with you!) … it’s a wonderful project for those who are dealing with infertility and fertility issues. It’s also a wonderful project for those who haven’t dealt with them to learn about how the questions that are so wondered about by us. I dare you (whether you are fertile or infertile or somewhere in between) to not end up teary while reading the responses. There are some very powerful responses in there. Also (to quote the post about the project) Since I was honoured last year with their first best blog award at Resolve’s Night of Hope, I get to introduce and help organize Resolve’s spring advocacy project, which will choose this year’s winner of the Hope Award for Best Blog at the 2010 Night of Hope. (….) All blogs and bloggers who participate in Project IF will be eligible to be considered for the Hope Award for Best Blog, presented at the 2010 Night of Hope.

I posted 3 IFs so far…. I’d like to share them here as well.

What if I can’t get a pregnancy past 5 weeks? …. this is a big one since with four pregnancies so far 5 weeks is the furthest we’ve gotten.

What if I never get to say “hello” until I’m saying goodbye? This is an even bigger one… each time I’ve been pregnant I’ve found out as I was miscarrying… so I’ve never even adjusted to being pregnant before I’m already losing that pregnancy. In fact I haven’t even known until that horrible bleeding starts, so it’s already gone before I even get to say “hi”…. if that makes sense.

What if I never get to tell Johnny “I’m pregnant” before I’m telling him “I”m miscarrying”? That’s the way it’s been going… I don’t find out I’m pregnant until I’m miscarrying. This one is the hardest! Each time I’ve told Johnny “I’m miscarrying” and that’s how he’s found out also. The last one I think I said “Well I was pregnant” rather than “I’m miscarrying” but the pregnancy was still past tense. 😦 I am so sick of telling him this…. and even more sick of knowing it myself. 😦

So after I got home yesterday I set my things down and went to our bedroom and started filling Johnny in (he’d slept through my appointment, he came home from work in a lot of pain and with a headache, so he stayed home, I told him I’d really like him to go to my next appointment with me, I would probably need the support, but that I understood why he wasn’t going to that one). After we talked and cuddled for a bit we both got up and I read him the list and discussed things with him more in depth. He has also seemed more hopeful now. He started doing a bunch of research to see if there was a specific type of olive oil we should use, and when I took my aspirin the bottle sounded like it had less in it than it does, and he asked “Do I need to get you some more aspirin?” … we’re totally on board here and together. It’s amazing how much more we’ve been together this year… not that we weren’t last year, but I think we were both floundering after those miscarriages, and there were some issues between us after them (Which have been talked about), we have a much better understanding of each other in this area of life now, and with the doctor’s suggestions and comments we are that much stronger together. I can’t even express how much this means to me! I know this stuff tears a lot of marriages apart (an example I go back to, is although we hadn’t reached this point, so it wasn’t a huge contributing factor, my ex and I started having more issues once we knew there could be more fertility issues than he’d been diagnosed with, and there was just a lot of stress resulting from it), but Johnny and I just keep coming back stronger, and it times it gets me almost into tears about all of it. On top of the amazing support with Johnny and I and the doctor, I have a lot of amazing supporters between family and friends. You all mean so much to me, and I don’t know how to put it into words. Thank you!!
However, the main point of this post was just to say how amazing the hope the doctor gave me, and her “homework” for us helped, and how amazing Johnny is being with just a little more information. I know he’ll be annoyed at me for this post (he doesn’t like me bragging over him LOL!), but I feel it’s a worthwhile post, and I’m so glad that we’re on the same page!

So I had an appointment this morning with the ob/gyn I decided to see when my PCP said he wasn’t comfortable handling birth control or any gyn stuff (beyond paps) for me.
I got there early (well, really early, I was supposed to be there around 20 minutes early and was closer to 40 early) and checked in, handed my paperwork to the secretary, and let her photocopy my surgery reports and photos (which I have for both laparoscopies). I sat and read in the waiting room for a bit, and avoided looking at the pregnant ladies. Once the nurse called me back we did my weight and I cleared up some confusion on the forms I had filled out (the doctor had a couple of questions she wanted answered before seeing me). I’m 94 lbs (I took off my shoes and was just in jeans, socks and a tshirt) and my blood pressure has been back to where it should be (actually a bit low) the last few times it’s been taken, today was no exception. I was at 102/60 with my blood pressure (good thing I’m not on bp meds anymore lol)…. which is a little lower than I used to run, but still much better than I was doing when my lupus started becoming a daily thing. I think at it’s peak it reached nearly 200/150 or something like that…. it was pretty scary.
The doctor came in after all of that was done and she had read all of my paperwork. She is very nice, and also deals with endo pretty regularly (she seems to be the main surgeon in the practice, though not the only one there), she also says she feels comfortable doing a lap for me when it comes to time for that. She asked if I’d done Lupron before and I said no, but I was told by someone whose entire practice is endo patients not to do it, and besides that, with my lupus I’m not comfortable with it, so she let it drop. We talked about the miscarriages and what could be going on, and that it’s a good sign I can get pregnant. We discussed the fact that both the endo and the lupus could be causing issues, but that at this point she wants to try the basics out before we go more in depth. We then discussed pregnancy and what she’d normally do with infertility, and what we can cross off that list since I’m having pregnancies, they just aren’t going to term. Obviously we know at least one tube is open (though there is concern over scar tissue on at least one since I have had scar tissue and adhesions on the left one before), so she’s not going to do an HSG at this point. We do need to keep an eye open for ectopics as I am at risk (even without the scar tissue history I’d be at risk due to the fact the endo could start going there any time), but she’s not too worried about it, though she does want to do checks on me with pregnancies in the future, to be sure we catch an ectopic early if one happens. We don’t need to do a sperm analysis, obviously things are ok there since there have been four pregnancies with me, and at least two (I won’t say beyond the obvious two that resulted in Gamer and Duckling, for a few reasons including being uncertain of the number) with Johnny’s ex. We also don’t need to do fertility drugs as obviously I ovulate.
She wrote out a list of “homework” for me to do, which I’ll write out here (as well as discussion about the points if there was any).
1) OPKs (Ovulation predictor kits)
Intercourse when the surge of LH starts getting close to the max. Times 4 days (right around ovulation).

2) Abstain for 2 to 3 days before that peak hits.

3) Minimize lubricant (as much as we can as I due to some other issues I need to add lubricant… we got into a discussion about pain and the affect it has on that here), and use olive oil rather than anything manufactured, as some lubricants that are made for this purpose can damage sperm.

4) As soon as a period is missed start testing daily for pregnancy. As my cycle lengths can vary I should go with about 14 days post ovulation, and definitely start by day 28 since that’s the longest I normally go without a pregnancy being the case (though 2 of the 4 miscarriages have been before 28 days, so if I ovulate early in my cycle I need to go more with the 14 days post ovulation rather than 28 days of my cycle).

5) Consider 81mg aspirin or heparin/levonox with pregnancy. We are worried even though the clotting factor tests I’ve had done have been negative there is still a genetic risk, as well as lupus raising my risk in general, so I’m going back on 81 mg aspirin (which I am supposed to do anyway… >.>) for now, though there is some talk about possible birth defects, she’s not too worried with that low of a dose, and I’d prefer to try that first. If we need to we’ll switch to heparin during pregnancy (for example if aspirin doesn’t stop a miscarriage we’ll give heparin a try the next time around after I’m pregnant).

6) Consider progesterone suppositories. – We discussed this and she said she’s not noticed it making a difference until the pregnancy has started, so I’m to call once I get a positive test and she’ll start me on them.

I’m to call as soon as I get that positive test so we can start trying to keep the pregnancy going. And we are going to do an ultrasound at the first possible time (she said about 5 weeks from the last menstrual cycle is when they normally can start seeing them with a vaginal ultrasound). From there we’ll see where it goes, but I suspect she’s going to be monitoring me closely, at least for the first trimester as all of my miscarriages have been early. If I’m not pregnant again by mid July (she said to go ahead and start trying again in my next cycle) she wants to see me so we can discuss what we’re looking at, and of course if I’m pregnant again before then I’m supposed to see her at the 5 week mark.

I think I covered everything… I can’t remember anything else, and I know I at least included everything I wrote down and the list she gave me.

Oh, and she ended the appointment with “I’m sure we can get and keep you pregnant, don’t forget to see your homework and I’ll see you in July, if not sooner.” (Or something like that)

The last couple of times I’ve slept the hormone/miscarriage induced dreams have hit. They haven’t been rough like in the past (though this morning’s did involve pregnancy and babies, it wasn’t a tough one like some of my others have been), but they are definitely hormone and miscarriage related… I’m currently trying to figure out why my blog isn’t showing all of those entries when I use the dream tag, I’ll link to the posts about my dreams when I can. It seems the hormones from the miscarrying are finally catching up with me, as my emotions have been more rough too. I’m definitely starting to feel the physical and emotional effects beyond just the cramping and bleeding. Also, even when my dreams aren’t related to pregnancy or miscarriage or babies, but are obviously hormone caused, they have a certain… feel or texture, I suppose, to them. There is just something different about them, even when the subject matter isn’t related to anything with pregnancy or babies. I don’t know how to explain it. That’s where I am at with the miscarriage though… on the roller coaster of dreams. It’s not my favorite place to be, that’s for sure, but it’s where I am at.

It has been since the 12th that I last wrote in my food/migraine diary about having a migraine. That’s the day I took the Excedrin Migraine and stopped it in it’s tracks. I had starting signs for one on the 17th, but after more rest it went back away. Today I have one again. I got really nauseated last night (couldn’t even finish my sandwich) and took an anti-nausea pill, slept from a bit after 3am until sometime around 7:30 am, at which point I woke up starving, had some breakfast, went back to sleep until 10:45 am or so when our neighbor who loves playing music (with LOADS of bass) very loudly woke me up, at which point I realized I had a migraine going. Two hours later the pain is manageable and more like a normal headache (though I’m sure if I don’t keep pain meds in me it’ll be a migraine again), with the help of most of a can of coca cola (yay caffeine…. ugh) and one half of one of my prescription pain pills. I have been keeping a food diary since the 12th, and also keeping track of pain levels, and any treatments I do for headaches, keeping track of meds I’m taking and when, and anything else that seems to contribute to my migraines (such as using the phone when it’s got white noise on the line, like I had to this morning when I called the landlady about our neighbor, and like last night when I had a quick phone call to make)… I notice if there isn’t static or other noise on t he line I can talk without it giving me too much of a headache, but if there is any noise on the line besides the person I’m talking to I’m prone to start having headaches. I have 3 foods I currently suspect for linking to this migraine. First is hotdogs, primarily because my pain shot back up not long after I finished having left over mac & cheese with hot dogs in it awhile ago, and we had that for dinner last night too, nausea started a couple of hours later. I had been craving corndogs about a week and a half ago…. and looking back at my diary/journal I had pretty much constant headaches (though not generally migraines) while eating those frequently. So that helps with my suspicion. The hotdogs are also a different (and cheaper) brand than the corndogs we buy (we’re corndog snobs … at least as far as what you can buy at walmart lol… they need to be one of two brands, the names of which I can’t think of… but they are the more expensive ones as the cheapies are gross…. hotdogs we’ll go cheap with though)… so that could be the cause of why hotdogs give me migraines, whereas corndogs just give me nasty (constant) headaches. My next suspect is Beef… which I’ve been trying not to eat as much of anyway. I have been having hamburgers again lately, so it’s been in my system more again. The third (and most sad) is chocolate. I still haven’t worked out what the link is there. I do know that I had been doing fine with small amounts of chocolate, but yesterday I had a bit bigger piece, and a different kind than I’d been having, and I”m having a migraine again. I think though, that it’s a coincidence with the chocolate and my headaches since I don’t always get a headache, let alone a migraine after eating it… but if I’m going into a migraine I crave it (and do pretty well not having it at that point, yesterday I wasn’t craving it, I just decided to try a piece again after not having any for a few days)… so we shall see… I’m continuing this food journal thing. Another thing to note is that this is the first migraine I’ve had since I started bleeding with the miscarriage…. I don’t know if that is linked or not… I know hormones were definitely causing some of the issues, so it could be. :/