My Autoimmune Life

I mentioned in my last post that I was going on bedrest. This has proven to be a very good decision, as I am actually able to move around some without cramps again, the spotting hasn’t happened since … it was either Tuesday night or Wednesday morning that I last had any sign of it, the cramps are a lot less painful, though they do still show up no matter what I’m doing, and they are much less frequent. I do still get groups of cramps … sometimes an hour or two of cramping, after which they go back away on their own. I think we will continue this way of handling things, I’ve also managed to get my pain med usage down A LOT! I think the physical therapy and stretches (the ones that I’m still doing, my nurse, PT and I agreed there are a couple that I shouldn’t be doing) are helping with my pain too, as are the back massages from my therapist and from Johnny. Things are definitely better now… I can even sit at my PC for awhile again, since baby doesn’t like the laptop (even with it lower on my thighs and nowhere near my belly s/he gets more active when I use it… and I’ve been able to help with small amounts of laundry and dishes, as long as I listen to my body and don’t overdo it, and I do it at times where I’m not cramping. Over all I spend a lot of time napping, sleeping, or laying on the couch watching things.
The best news…. Littlest is still very active… and becoming more so!

So…. Johnny and I had an appointment to go to this afternoon, and I (stupidly, but I know my freedom to drive is going to be restricted before too much longer even without bedrest, so I am driving as much as I can) drove us there. I was fine on the way there, I was fine in the waiting room beforehand, I was fine during the appointment, I started having some mild discomfort after while we were waiting to talk to the financial lady, so I left my contact into and a message for her and we got out of there. About… 1/3 or 1/2 of the way home I started having more and more pain. No discharge thankfully, but definite pains that were getting stronger… though they were still having all sorts of different timing in between, completely irregular in that way. So it was a mix of actual preterm labor signs and false labor signs. I ended up with 3 fingers on each hand numb from how I was clenching my hands, and I’m sure I made Johnny’s hand uncomfortable at the very least, as I was holding onto it with one hand. The good thing is once I got back home and got onto the couch (I’ve only gotten up to pee since, this is a few hours ago now) the bad cramps cleared up. Still having pain, but nothing major like I had been having, just some discomfort and really minor cramping.
Johnny and I were talking about this a bit ago and both agree it’s pretty likely I’m goign to be officially put on some type of bedrest pretty soon… which is not something I’m looking forward to yet, but I’m also not getting too upset about it at this point… well… trying not to anyway… there are definitely emotions there, but I’m trying to keep them in check for now.

Having false labor now at 20 weeks. So far no true labor signs, and am now spending my time on the couch (with lots of pillows and the laptop). Won’t be around much on twitter (and I’d just started getting more into it again too!), though I’ll be on other places when I’ve got the laptop on (facebook, blogfrog, not sure what else)… I just don’t like web based twitter, and so far haven’t found something I like that can be used on Linux to be able to run twitter outside the browser. I’ll also be checking my emails throughout the day, so you can reach me that way…. I’d love to keep in touch with people, and keep up with everyone. Also… definitely wanting company that much more since I’ll be in bed or on the couch pretty much constantly, which gets boring… though it’s worth it to keep Littlest “cooking” longer, it’s just boring lol. I’ll also be doing a lot of reading, thankfully I went to the library yesterday before all the cramping and other pains started.

I’ve said that about a few things lately, but the big one happened a few hours ago, this afternoon, when neither Johnny or I were feeling well. He leaned his head on my chest and belly while I was standing in front of him leaning towards him. After leaning for a ccouple of minutes he started poking my belly in the area Littlest usually hangs out in and said “Hey, it’s your Daddy, wake up!” I felt some movement, but Johnny couldn’t feel it because it was flutters toward my back, so I think Littlest had his back towards my belly and was moving in the opposite direction of where he could be felt by anyone but me. It was still one of those moments I wish I could have frozen in time.

Kate at Busted Plumbing brought a new meme to my attention. This is the first week for the Saturday Snap Cup meme.
As The CEO puts it Saturday Snap-Cup is your chance to share a story of appreciation with your readers. Being positive one day a week instead of venting about how hard it is to sip coffee and gab with my girlfriends while our kids wreck whomevers house we are at be a mom is the least I can do! Share whatever you’d like–send a *SNAP* to your newest follower or favorite blogger, a *SNAP* to a stranger who gave you a compliment that made your day, a *SNAP* to a new lipgloss that makes you feel like a rock star, or even send a *SNAP* to your kids by sharing a picture of something they did that put a smile on your face!

This week I’d like to send a *SNAP* to my OB for including the kids in the appointment this week when we took them. They had a blast and are still talking about how great it was to get to help and to hear the heart beat. I love that rather than just letting them hear the heartbeat when she put the doppler up to my belly, they each got to do something with the appointment – Gamer with the doppler and Duckling with measuring me. She made all our days with that one move, and made the kids extremely glad they’d gone with us rather than them and Johnny staying at home so they didn’t have to do a long car ride. We didn’t even get complaints in the car, other than one question of how long it would take to get there, and we didn’t get any on the way home at all.

If you’d like to join us with this feel free to head over to this post and take part!

I had another appointment today. All four (well, five if you count Littlest, though there wasn’t a choice for him lol) of us went. The kids each got to take part in the appointment. We’d decided since they won’t be with us much longer, and won’t be back here again until Littlest is somewhere between 4 and 6 months old, that they should go with us so they could hear the heartbeat.
When my OB came in, once she got set up (she’d done a morning surgery, and was running rounds right before my appt, she had a woman who was at 9cm so she expected a delivery not long after my appointment) she told the kids she needed two helpers. Gamer helped with the doppler, and Duckling got to help hold the measuring tape and measure fundal height, though we aren’t at that point yet for it to be accurate.
We discussed meds, I’m officially changed off the shots and back on 81mg aspirin (though, this change happened after my last appt when I was getting sick and in tears each time we’d do a shot, my peri had said I could go off, but he wanted my OB to give the final word), I’m off my flexiril (which is a relief to all of us, we’d rather I not be on any muscle relaxants), I’m lowering my vicodin dose back down to as infrequent as possible… I’ve had 1/2 today. She was glad to hear that I’m going to go to therapy and a psychiatrist, and told me what meds I can be on if the psych feels they are necessary to stabilize me. Littlest and I will be weaned off of them prior to birth, then I’ll go back on them post birth, because there is a risk of withdrawal in the baby if I stay on them through birth.
We also decided I need to do physical therapy due to my back and leg pain, so we’re adding that to my busy schedule. I should get a call from the physical therapy place tomorrow to set up an appointment. If I still don’t hear from them I’ll be calling my OB’s office again to make sure the referral actually got sent.
My busy schedule now includes WIC (still monthly, they said I could go longer, but we’re still more comfortable tracking my weight with them since they are handling dietary needs and can give me meal ideas); my home nurse (every two weeks for now, it will go back to every week around birth); counseling/therapy – no idea how often yet; physical therapy – no idea how often yet; my perinatologist – depending on this next appointment we’ll see if I go back to him, or just increase OB appointments; my OB – who I see again in four weeks, it will likely go to every two weeks after that appointment…. I think that’s everything pregnancy related, but I’m not entirely sure. So quite a bit going on, especially since my WIC and home nurse appointments fall together when I have WIC appointments, and of course my other (non OB/peri) appointments are likely to be weekly, if not more often. OH!!!! And I have to see my rheumatologist next week, and I’m not sure how closely she’ll want to follow me with the pregnancy since I haven’t managed to see her yet during it. I’m being pushed to get back to her ASAP as my lupus has become worse with the pregnancy. So we shall see what happens as far as my other appointments. And those are just my appointments, that doesn’t include our errands, or Johnny’s appointments, which I go with him to.
I’m glad that such great care is being taken with me and Littlest, but it is definitely getting overwhelming.

So today was a busy day for appts, my inhome nurse came by today (we mainly talk about symptoms and how I’m feeling, do basic monitoring of my health as far as how I’m feeling, and discuss pregnancy and babies, birth and that sort of thing)… I was NOT feeling well. It was a very miserable morning, and I’ve been feeling bad the last few days. We had a good chat, as always (I love this woman, she is fantastic… all four of us – five if you count baby, since she is a regular part of Littlest’s life too – love her), and I woke the kids up so they could see her for a few minutes before she went to her next client. She was concerned enough about how I was feeling, and about my weight, that when she went back to the office (She works out of the health department, which shares offices with WIC) she went and saw my WIC lady and talked to her between appointments and let her know I was having a rough day, and asked for an update when we got my weight. After seeing her and getting the kids breakfast I went back to bed for a couple hours before getting up for lunch and doing things with the kids (it’s been a challenging day with them as well), then went to WIC.
So the great news is that after actually losing weight before my last WIC appt and being put on Ensure 3 weeks ago (I saw my OB the week after the appt at WIC where I was last weighed, and my OB signed the rx form so I could get Ensure with WIC) I have GAINED WEIGHT! I was down to 93 lbs a month ago, and like I said, 3 weeks ago I was put onto Ensure – two bottles per day. Now I am up to 99 1/2 lbs!!! That’s right… in 3 weeks I’ve gained (Drumroll please!) SIX AND A HALF POUNDS!!!!!!! I can’t tell you how happy I was to see/hear this when we weighed me! I was nearly in tears. This is some awesome news that was desperately needed at this point, I’ve been having a hard time with a lot of things, some health related and some not so health related. I’m going to be going to therapy starting in a couple of weeks for that, but in the mean time I needed something to lift my spirits! And of course I had to come do a blog post about it so everyone could share in this wonderful news!

I had a few days lupus free… I guess almost a week. I think it was last Saturday or Sunday the flare finally mostly let up, and I was brace and splint free by Wednesday. I started using them less last Monday, but still used them when I started moving around much both Monday and Tuesday, especially with my driving on Tuesday for my OB appt. I have had my mouth blisters/sores most of the last couple of weeks, but they don’t really bother me or interfere, so I don’t even think of them when I think of a flare. That’s been the only sign of my lupus until I started having preflare signs again yesterday and today. Yesterday I started having more aches in my elbows like the lumps there are trying to come back, and today I had trouble getting out of bed, and my joints are aching more. I may have to wrap up my right knee (well, Johnny may have to, he’s better at the ace wraps than I am, I don’t have a knee brace right now), but I should make it through today before it gets too bad again.
My kidney pain let up when we stopped the heparin a week and a half or so ago, but last night it came back strongly. I started having sharp stabbing pains in my left kidney late last night and the ache and whole kidney pain is back in force today. The nurse at my OB’s office is mailing down the paperwork today for me to get the labs done to check kidney function. I’ll be doing a 24 hour urine collection and they’ll be checking some things in my blood when I turn in my urine. They’ll also do some other blood work as well, but that’s not related to my lupus or kidney at all.
The pregnancy seems to be going well, the only issue is my weight, but that doesn’t seem to be affecting Littlest at all, when I had the ultrasound s/he looked right on track for gestational age, and the heartbeat is right on track as of last week.
My doctor mentioned last week that there was no way we could be feeling movement or kicking yet, and that it must be gas, but my in home nurse agrees that with my weight it seems likely we may be feeling it, and Johnny has gone through two to term pregnancies in the past and felt movement and kicking through his ex’s belly before when Gamer and Duckling were in utero, he has felt some obvious kicks. Also, as he said when I told him what OB said “You can’t wake up gas” and we can definitely get responses from Littlest when we put pressure on my belly in the right spot, or start tapping that area.
It’s monsoon season where we are at, and we’ve been having storms the last few days (at least, I can’t remember how long now)… yesterday I got some great pictures, so I thought I’d include one of the pictures that caught the double rainbow in it.

I had an appointment with my regular OB today. The only issue going on with me is my lack of weight gain. She did paperwork so that I’ll be provided with lactaid free whole milk, and Ensure. That will hopefully help with my weight gain. I think two big issues preventing weight gain in me have been that at least once a week I’m ill all day. I may not vomit all day, but I’m at the point that just getting fluids in me is a struggle those days. And I am prone to having everything solid come back up. I think the other issue is that most of my cravings are not for fattening foods, they are for fruits and veggies – which, while healthy, isn’t helpful for me gaining weight.
I’m off the prometrium/progesterone now! I can’t tell you how much of a relief that is. And, pending her talk with the peri I will be off my heparin soon (even though he told us very strongly that there is no reason for me to be on it, she wants to be sure my lupus isn’t enough reason to keep me on), which will be an even bigger relief, especially since we strongly suspect my latest lupus flare was linked to said medication. What can I say… my body likes to be difficult and react in funny ways.
We found the heartbeat with the doppler today.. .baby scooted away from the doppler so she had to hunt it back down lol. The heartrate is right where it should be… it was 140 something, when she stopped checking it it was up to 150. I’m hoping this is a good sign that nothing is wrong with Littlest’s heart since there are a couple of risk factors for it – my lupus and some heart issues that showed up in both of my male cousins on my dad’s side… if I’m not mistaken they were both born with holes in their hearts, and I’m pretty sure they’ve each had 3 open heart surgeries… I know the one 11 months older than me has had 3 for sure, I remember one of the surgeries (his most recent, when we were both in high school) and I’ve heard stories about the other two. So hopefully the good beat is a good sign. In 7 weeks they’ll be doing a scan to check all the organs, and paying close attention to the heart, so we’ll know more in September on that front.
The only other news I have is that I hit 14 weeks yesterday, and am now in the second trimester no matter who you ask! Some people say I switch to the second at the end of 12 weeks, others say at the end of 13, the receptionist and nurses I’ve talked to at the OB office when I was switching meds around said 12 to 13 weeks is when it switches lol.