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.
Thu 19 Aug 2010
OB appt 8/19/10
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Mon 16 Aug 2010
SNAFU
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My depression is back (I was diagnosed years ago with a chemical imbalance). Also, the breathing issues, some of it seems likely to be asthma, but some of it is definitely anxiety attacks. 
There’s a lot going on in our lives right now, some of which I’m not going to go into in great detail on the blog, though I will mention Johnny’s hip is really bad, and he’s had to be out of work. I also have my health stuff all going on still, and a ton of appointments going on for my lupus, pregnancy and mental health. And a lot of stress from all of that plus the other things going on in our lives (getting the kids back to their mom and stepdad’s for school would be a big one right now)….
I had depression in high school, and honestly I’d say it never went away completely, though it has been more manageable. It’s now starting to get to the point I am not able to handle it on my own anymore, I will be starting at a mental health clinic next week, I’ll be seeing a therapist next Wed, and after that (not sure how frequent the appts will be or when I’ll be there next) I’ll be seeing a psychiatrist who works there. I’ll be seeing him to get stabilized, then my appointments will be with a therapist and a nurse (the nurse to follow up on the psych’s suggestions). I want to start getting this taken care of now, and am glad I’m in a place where I can at least do that much. Hopefully this will help keep me from ending up with PPD, or at least we can get the depression going on now under control and continue that after the birth so hopefully there won’t be changes going on with my depression at that point.
Thu 12 Aug 2010
Some great news!!
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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!
Sun 8 Aug 2010
My asthma is back…
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I’m having more and more difficulty with shortness of breath the further along I get. Just getting up and doing the dishes leaves me short of breath and feeling like I’m not getting enough oxygen.
I had asthma as a teenager, though the attacks were more severe, they were also less frequent, since they were exercise induced (like… running) or caused when my allergies were really bad.
I don’t know for sure this is asthma, but it’s been in the back of my mind that it may be, and from talking to other asthmatics it sounds like we’re likely to have more asthma and breathing problems early on in pregnancy, even early on, and even if our asthma has been in remission for years.
I had almost exactly 7 years remission with my asthma. It only really bothered me when I had severe allergy trouble, after going into remission right around my 18th birthday (like, within a day or two of my birthday), and it came out of remission right around my 25th birthday, with this pregnancy.
I’m thankful to have had that break, but it’s really frustrating having multiple… spells of whatever is causing the shortness of breath every day. It’s making it hard to do much of anything, since just doing dishes or getting up and standing at the stove to cook, or getting dressed all can cause it to happen.
Thu 5 Aug 2010
I’m so sick of this!! (and kidney results)
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I got my latest lab results back yesterday, according to the latest tests my kidneys are in normal range for the levels that were tested (creatine and protein) and my OB isn’t worried. The nurse told me to call my rheumy and get in with her (which, from what I understand, she’s on vacation) or with her on call doctor if she has one (nurse insists she must, but I’m betting if she does the on call is in another city). I’ve been in a kidney flare since Tuesday, though at times it lets up, it’s really bad today. I’m just sick today with headaches, nausea, kidney pain and all around lupus stuff. And I”m tired… I’m tired physically and I’m tired mentally.
I’m also sick and tired of having to be detective for what’s wrong with my body…. I’m NOT the medical professional, yet when they aren’t listening, or when there isn’t something glaringly wrong (though, if I have days where I can’t get out of pain due to bed I’d say there is something glaringly wrong) they don’t look into it as much as they should. I’m sick of Johnny and I having to be the ones coming up with what could be wrong, then pushing my doctors into doing tests to find out if we’re right or not. I’m sick of us having to be detectives. And I’m sick of my body and mind, at 25, failing me. There are days where I’m great, I can communicate, I can walk and move and get out of bed and run and do all sorts of things. Most days aren’t like that though. Most days it takes me awhile to find the words I’m looking for, and by the time I find the word I forget what I was talking about…. OR… I start rambling on defining the words I’m trying to use so that people can figure out what they mean. That’s one of the things that bothers me most when I start getting down from all of this… the mental affects. It’s also why most days I won’t use our phone (if it’s even working) to talk to people, and why most people can’t reach me on instant messengers either…. communication is too difficult, and either I can’t say what I want to say, or I end up with craziness coming out of my brain and going straight to my mouth or fingers before I’ve really thought about it and been able to realize that’s not what I mean or it’s now hot I should say it. Today though, as much as that’s all bothering me, what’s really bugging me is that at 25 years old my body can’t do it’s job right. I’ve got multiple diseases where my body is attacking itself, and/or not attacking what it should be. My endo seems to be a case of both (rogue tissue goes and grows where it shouldn’t – attacking itself, and my immune system says “oh, that’s part of my body, I don’t need to attack it” and doesn’t do anything to stop it – simplified version of one of the theories going around right now), my lupus is my immune system attacking other parts of my body and being over active, and I have other health issues that are more of the same (though they don’t attack me as badly)…. the other stuff is minor compared with those two generally. I’m just so sick of all this crap going on.
Wed 4 Aug 2010
I don’t normally do this, but….
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I’m going to share a link to a blog post that really touched me today (thanks go to Sonja for sharing it with me)….This post ( When I’m understood I’m healed needs to be read by everyone, it is incredible.
Mon 2 Aug 2010
Pardon me while I rant… or try to…
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My wrists are bound up again, they were fine yesterday afternoon and evening, so I went without them again (I try to do this whenever I can so my arms don’t get to the point I need them constnatly), and this morning when I woke up they hurt. I wore them for awhile and my wrists seemed better, so I took them back off, only to end up in even worse pain even when I wasn’t using them to do anything, so I guess this flare is still going, and I’ll be bound for awhile.
On another note, I’m irritated at my word issues. I just had to define the word I was trying to use while talking to Johnny (I was looking for allowance, my sentence ended up being “Since we don’t give them money for doing their chores” followed by me asking what the word for that money is)…. and that really irritates and humiliates me. I hate not being able to remember every day words, and words I used to know really well. Some days I’m great at saying what I’m trying to say, others I have to do that once or twice in a day, at least half the time my sentences are full of umms and I can’t even think how to define the word I’m looking for. And that just… it really bothers me.
Both of theses things are reasons you don’t see more posts from me.. I know that typing too much (even with my braces) can cause the flares to last longer as my wrists get more irritated, and when I’m having my days where I can’t find words, I have no motivation to try to type up a blog post, just talking to friends and family gets difficult, and having communication with my friends and family (when we can connect) is more important to me than trying to do a blog post… though of course I don’t know all my readers, and for those I don’t know, this is our form of communication, but I think you know what I mean…
Thu 29 Jul 2010
bedrest day
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Yesterday the kdis and i had a vehicle to go to the park in, so we did. I also had errands to run. I ended up getting too much sun (though not at the park, it was the errands that did me in) and cauging more of a lupus flare. I also walked too much and am paying for that in my lower back anddown my left leg… today is also the day I’m doi8ng my 24 hour urine collecyion, so Im sticking close to the bed and bathroom.
Pls excuse typos – laying on my side and typing one handed.
Mon 26 Jul 2010
Some updates (lupus, kidney, pregnancy, maybe other stuff)
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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.
