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….

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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 I went to walmart to try and buy ovulation strips a couple of days ago, only to find they no longer carry the ones I was planning to buy, and the next ones are almost a dollar a strip. They come out a bit cheaper than the Dollar Tree ones, but not by much. And the other ones are even worse (7 of them for nearly $20? I think not!)… so I came home to do some online looking. The ones I was going to buy are no longer available at all. On all of the available strips were more expensive than the ones at walmart or on walmart’s website. I ended up going to amazon and buying generic ones… I got 25 of them for $7 (and free shipping)!! But I think I’ll probably be at the point where I should start testing before I get them.

However, I don’t know when exactly I’m supposed to start (research makes it look like, if I go with my shortest cycle lengths I should start with cycle day 5 for testing? And keep testing until I ovulate? I hadn’t thought of all of these questions while in my appointment, and my doctor is only available a couple days a week (and it varies on the week due to some stuff in her personal life, I”m guessing health of a family member or something)…. it’s all scheduled out a couple months ahead of time, so it’s not like she cancels days on people or anything, but she’s not there the same days every week (from what I understand from the secretary) so I’m going to try calling in the morning, but not sure if I’ll get an answer. And is there a time I need to test? Like first thing in the morning or a few hours after I wake up? I’ve seen mixed answers online to that one, so I’m not sure what to do here!

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)

And no energy to put it all together in a way that would make sense… so I’ll sum it up.
Headaches still aren’t gone (started somewhere between Jan 1 and Jan 4… pretty sure it was the 2nd) and they ended up worse again in the middle of the week last week (It’s Sunday today right? That would make it last week? It was the 3rd of Feb or the Wednesday right around then that they got worse again).
Had a period only 24 days after the last one.. .so a 23 day cycle, while on birth control. Getting ready to ask doc to take me off the med that is making me stay on the birth control as it’s not making much difference and I’m really tired of pumping that crap in my system.
After no cysts (that E or I can think of) since right before the first miscarriage (so last June) I seem to have one again. I should say no definite cysts, at one point in the fall I thought I had one again but I never had the pain from it popping, so not sure. Definitely having all the normal symptoms this time, we’ll see if it pops or if it resolves some other way? But sudden horrible pelvic pain (post period, at a point in my cycle where I should be in THIS much pain), a weird cycle leading up to this, lots of swelling on the left side of my abdomen, pain that centers on the left ovary when the rest of the pain is more under control, and ovary tenderness in the last few days (which I was chalking up to heading to ovulation, since I do still ovulate on birth control, it just keeps my lining thin enough to not implant)….
In other news I have two blog posts I want to point my readers to. I had another one but I can’t seem to find it or remember what it was.
First off I want to point all Interstitial Cystitis patients to Jeanne’s blog post about educating Congress about IC … she received an email about it from the ICA and they want patients to email them their IC stories. (Sorry for scrunching this in here Jeanne, I just know you word it all better than I could and I want to make sure the info reaches more IC patients…)
Secondly Kate at Busted Plumbing is doing a giveaway at her blog which I recommend for all people with fertility issues or infertility! I had a great post planned out just for this, but I have not been feeling up to doing anything with it, though I do want to spread the word (Sorry for bunching your contest in with everything else Kate) so… Please go see what it’s all about and take part if you are interested.
I think that is all I wanted to post about over the last couple of days (including this morning since a couple of these things just came to my attention) … sorry that it’s a shorter post and for not giving more info about the links… I’m just really unsure how to explain all of it right now.

Ok, let me preface this by saying I’m in the middle of my period, and it started out of nowhere, through birth control and with a short cycle…..
Over all I’m doing pretty well with the miscarriages. I’m definitely a ton better than before Christmas, and so on. However, I should be somewhere in my 9th month of pregnancy now if I hadn’t had the first miscarriage, and although overall I’m doing ok with that fact, it still stings at times. I would have been due somewhere right around the last week of February if I’ve done the math right the many, MANY times I’ve done it. It isn’t easy to realize that fact, but it doesn’t hurt as much as I would have expected it to…. probably because I’ve had long enough since I was last pregnant that pregnancy isn’t running through my mind as much now… and we’ve stopped trying so my focus isn’t on pregnancy. It’s been mostly on taking care of me, taking care of E, and getting rid of these stupid headaches.
On the headache topic – as long as I take my Plaquenil twice a day like I am supposed to (I’ve only missed one dose since the beginning of the month) they aren’t as likely to turn into migraines, but they are still bad headaches that are there almost constantly. With vicodin I can get the pain down to around a 3, and when they get really bad I also take an alleve (which overall I’m avoiding due to the digestive issues that run with me taking NSAIDs) which helps bring the pain down to about the same level. I’ve been getting breaks in the pain, not frequently and not for more than a couple of hours, but I have been having breaks from the headaches finally! These breaks started somewhere around a week ago and I’ve had 3 of them.
On the topic of E – His pain is extremely bad tonight. I took him his morphine almost two hours ago and he’s still in bed unable to get up due to the pain. An hour ago I took him a vicodin (his doctor has him on morphine consistently and vicodin for breakthrough pain) and he’s still really hurting. I wish I could take his pain away. I don’t care if I’d have to feel it myself if he just weren’t in so much pain. It’s so difficult watching him hurt, and understanding chronic pain, even if I don’t understand his exact form of pain, makes it even more difficult because I know that although it becomes less with the meds (usually) it doesn’t go away, and I know how difficult that is. He had wanted to be out of bed almost two hours ago, so I took his meds to him and started waking him up, and he has been unable to get the strength and lessened pain to be able to get out of bed. 😦 I would take his pain on myself if I could to make him feel better, and I know he feels the same about my pain. It’s just so hard to watch the one you love suffer. 😦
As I mentioned I’m in the middle of an unexpected period. My PCP and I have agreed that we think the Nuva Ring will be worth a try to see how I do… I just need to make it a couple more months until I can go back off the blood pressure medication for awhile (which isn’t making enough of a difference for me to want to continue, but I want to try it through the whole winter and see how it goes) and start trying again, if the rest of my health is in order. He (my PCP) tried to recommend an IUD for me to see if it would help with the endometriosis, but we both agreed that is definitely a long term investment, and I’m hoping that going back off hormones (or changing them) will bring my health back a bit better and I’m hoping to potentially start trying for a successful pregnancy again in a couple of months, so we’ll see what happens. Obviously though this birth control pill is not for me. And although we agree with my rheumatologist that the migraines are due to my lupus, we aren’t wanting to up the estrogen content on a pill any further. I know that I can’t do progesterone only birth control pills or shots, so the Nuva Ring is our next method to try. If these migraines and nasty headaches continue for more than another month or so (Dr. Rheumy is unconcerned unless they go more than a couple months) I will be going off the birth control and blood pressure medication… this is my own decision, which will be discussed with both doctors when the time comes… but I want to go back to the basics if they continue… and since both of these were started within a couple months before the serious headaches started I’m not convinced they should be continued if the headaches continue, I want to go back to where I was before all the changes and see if I can get my body a bit more under control. Those two things and cutting out beef (mostly, other than the rare meal with hamburger) have been the only real changes in my life other than a couple stressful situations which have been cleared back up. When I was just on Plaquenil I was not doing great, but I was definitely better than this. And since I can’t take the blood pressure medication without being on birth control (other methods don’t work for us for a variety of reasons) both are going to have to go. I will be sad to go back to having my fingers not work with the things they put on your fingers in doctor’s offices to check O2 levels (and pulse?)… but that is about the only thing that has noticeably improved while on the blood pressure medication (which was supposed to help my Raynaud’s a lot more than it has) so I’m ok giving that up to get back to feeling a bit better. Going off of those medications is not guaranteed to improve my health, but I want to at least give it a try.
I had other things I wanted to talk about but I can’t remember what so I guess this is the end for now lol! 🙂 I’ll do another entry at some point with an update on things.

This morning was spent on E’s and my health. We both had appts at our PCPs office to get our labs run. E is having the normal works…. CBC, Complete Metabolic, urinalysis to check kidney function and make sure everything is normal there too. I think theres another test or two, but I can’t remember. On my end it was all but two of the tests that were ordered when i was at my rheumatologist’s office the last time (9/29), the remaining blood tests need to be drawn at the hospital, as they aren’t in the tests that the lab our clinic sends it’s tests to covers. And that sentence will probably need to be fixed later when I’m more awake. Basically the clinic that provides our primary care has a draw station attached, and can run certain tests as well. The rest get sent up to a lab in the state’s capitol city, as the clinic is a state run clinic, and that is where the state’s lab is. They do not provide all testing, and do not have the ability to do all testing, I’m not sure if the reason is financial or something else. So the tests that aren’t able to be done by that lab are tests that have to go on another lab order for me to take to either the hospital we live by or the hospital my rheumatologist ie abouts connected with (her office is in the hospital complex in the city she works out of). After I get these last two tests run I will call and set up my next rheumatology appt and will likely get the results of everything in three to four weeks, as she only works two days a week at that office, so she is usually pretty booked up, and that also gives the hospital time to get all the results to her. The clinic, which ships all of my labs to the opposite end of the state, gets my labs back faster than the hospital, and is more reliable about actually getting them to my rheumatologist. So a few days before I go see her again I will have to call and make sure they have received all of the results. If not I’ll have to call and bother the hospital until they send the results to the proper place.
While we were getting the other labs done they ran the pregnancy test that my PCP wanted done before I started the bcp. It was negative… no surprise there. So I started on my birth control, and back on my blood pressure medication (for my Raynaud’s) after we got home. And I’m warning everyone now, it will likely turn me into either a ball of tears or a raging bitch, and probably I’ll go between the two until I get through the adjustment period. If I can get my body to cooperate I will be using the pills continuously, so hopefully that means that I will settle into whatever normal will be for me on this pill rather quickly and stay there until I go back off of it! We’ll see… I’d like to skip periods as much as possible during that time, and it has the added affect of no changing hormone levels since I’m on a monophaisic… so unless I’m having periods every month my hormones will be staying the same (or close to it) constantly until my body decides it’s time to bleed or I go back off of the pill. And if that works, it’s good news my friends. In fact it’s excellent news!
Oh, and a report on the amount of pokes for my labwork… two! And not only that, my blood flowed well enough for them to get the full amount that is liked for the tests, rather than just the bare minimum, which is what usually is drawn if they can get my veins to give up any blood. So I’m keeping myself overhydrated again tonight, then going to the hospital tomorrow as long as I continue to feel alright, at which point those other two tests should be easy to draw for!
The trick seems to be drinking a lot more than necessary for staying hydrated, so my veins stay plump, followed by them applying heat to the area of my arm they want to draw from immediately before they insert the needle. Between those two things and the tourniquet my veins end up showing themselves!

So I forgot to blog about these in June/July after my miscarriage then, and I’m going to do so now for future reference if it happens again. Also because I need to remember to tell my PCP about them, and because I’ll need to tell my OB when we start trying again. My PCP and E’s PCP discussed my case and both of them recommend me going to a specific OB in the same city as my rheumatologist… there are no OB’s in our town/city… we have a bunch of doc’s… but no OB’s… the only one we had moved to the east coast sometime in early 2008. So we’ll have to drive an hour to an hour and a half each way for OB visits… hopefully I won’t be pregnant during the winter or that’ll suck… though I’d rather be pregnant during the winter than the summer…. for a lot of reasons! Hopefully I won’t have to have frequent OB visits. I’m also hoping to have a midwife, but there is only one in the area who travels to where we live, and she only takes low risk pregnancies, so I doubt that will be happen. I’d just rather have a midwife, and see an OB while for the fertility counseling my PCP wants us to have due to the miscarriages and to check into risks. But I know with my health issues an OB would be better, and it’s likely we’ll have a hospital birth, though I’m really hoping to avoid C-Section for a lot of reasons… thankfully E and I have talked in depth about our wishes for how the birth will be handled if we ever get that far, so he’ll be able to help advocate for me.
Anyway… I was going to post about the other ways the miscarriage is affecting me (and the way the last one did, which I hadn’t entirely realized was connected). I have been nauseated in the afternoons about an hour after we go to bed both yesterday and today. This happened after my first miscarriage too, at the same point in my cycle (right about when I “should” ovulate) and I wasn’t sure if I’d managed to get pregnant again, though I knew it was really early for pregnancy symptoms. Also, I start getting mucus changes at the same point in my cycle as normal, but they end before they change into “true ovulation discharge”… about a day before I get ovulation changes. So I’m coming to the conclusion I don’t actually ovulate since all discharge stops at that point, and I don’t get the “egg whites” on the day I should. The fact I don’t seem to ovulate (though I’m sure I do at some point, since I do end up having a period… though my cycle last time was longer than normal, and I’m guessing it will be again this time) and the nausea are (I’m assuming) more signs of my hormones regulating again. So that’s how the miscarriages mess with me (nonemotionally) a couple weeks after they happen.