I don’t know where to start to update, so I”m going to start with the latest that’s going on.

 

Still grieving Lily (as I’m sure I always will), but I’m feeling alive again.

 

I had another echocardiogram a couple months ago to check on my murmur. When I went to get my records for social security the hospital included the cardiology report. Someone I know, who is a nurse, read it and explained it…. NOT OFFICIALLY! The understanding of it is that I have two small murmurs, and I have some enlargement of my heart. Now, whether this is lupus or not, and what level of concern this is, I’ll find out on Sept. 11. 

I’m still on prednisone because I ccan’t go below 5mg without neurological symptoms starting up. I’m pushing for a neuro work up when I see my rheumy.

I’m having a ton of foot pain…. the doctor I saw at the walk-in clinic thinks it is from my lupus, attacking the stationary joints in my foot. Xrays have been taken and I’ll find out more on the 11th. 

 

Lupus just seems to be out to get me, even when I’m on 3 meds strictly for putting it into remission 😦

 

The kids are great. Gamer started HS this year, and Duckling is in her last year of elementary school.

Abilify makes me sick, so today I stocked up on tummy remedies. Ginger Brew, 7Up, soda crackers, chicken noodle soup. Hopefully they help! (Also seen on twitter, which I copied and pasted it from.)

I have no idea how consistent I’ll be, just so you all know, but I am back to blogging here!

I’m off the haldol (It caused some scary shit that is mostly cleared up now and wasn’t all in the paperwork they give you, I’ll go into more detail when I can get to my journal), and on Abilify.
Not sure it’s doing anything for me yet, what I’m feeling may just be the result of going off the haldol.

Side effects from the abilify have included nausea/vomiting, sleep problems (which are clearing up now) and restlessness.

If it works for my bipolar I can deal with it!

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On the lupus front – not so good. I’ve got to get a rheumatologist again. Nothing new, just lots of pain from the weather, and a need for more aggressive treatment so it doesn’t get worse. In the same boat with fibro.

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Endo – my ovary is waking back up from it’s 2 to 3 month nap due to the haldol (I didn’t ovulate while on it) and is making me hurt pretty badly.

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Grief – here’s the big one. I’ve acheived peace most days. I’m still sad, I still miss her, I always will, but there is a calmness about it all..

So I’m getting ready for my 5th in about as many months….

The ones that seem to work either don’t make it through the hormones on my period, or I get too much serotonin and end up having all sorts of issues with acting out my dreams physically.

And the risperdal works for my mania, but not my depression. I can up the dose a bit more and still sort of function, and maybe it’ll help my depression, but I’m too tiny for much more in my system.

We’ll see what comes next…. I’m going in this week to start the paperwork for abilify since that’s why my doc had mentioned as the next possibility…. hopefully I can get it free or really cheap or I can’t even try it. :/

Now trying Lithium out for a mood stabilizer….. it’s not doing fun things to my stomach, but at least although there haven’t been changes that have been too noticeable yet, my anxiety does seem to be a little less. I’m also feeling a bit less depressed, but that could just be that my hormones have shifted.

On the IUD/endo front things are… interesting. The good news is that my periods are much lighter, almost to the point of non-existent as far as bleeding goes. The bad news is that this month I’m having a terrible period pain wise….. yesterday was the worst, but today hasn’t been fun (though I have managed to just get by with OTC meds today for pain)….

For those who don’t know, I was on a new mood stabilizer when I saw my doctor last (lamictal) as the seroquel started causing more and more twitching issues.

I had to go off of the lamictal about two weeks into it due to my lupus symptoms being worse (which the lamictal can cause…. well, technically it causes lupus like symptoms in lupus patients, but whatever, it made me feel worse with my lupus!) …. and I ended up having side effects that can be quite severe….. but I also had a virus at the time, which are the exact same issues as the side effects I had going.

My psych at this point can’t get me in until Sept, and she doesn’t want me seeing any provider except her until we figure out the right mood stabilizer. So I’m going to start the lamictal tomorrow and give it a second try. I’m not sure what will happen, and I’m pretty freaked out, but I also know that I need some type of mood stabilizer. I hadn’t realized it was helping until I went off of it and started cycling more again….. so obviously it was doing something with my thought processes and actual moods. Hopefully it works out better this time!

I’m on the cancellation list to see my psych sooner if an appt opens up!

We officially changed my diagnosis today.
I was told last week that I was bipolar, today I was changed from Major Depression to Bipolar II with depression in the computer.
My meds have also been changed again…..

Before I go any further…. I am talking about MY meds…. I am not a doctor, I’m not offering any advice, I’m not saying anything about how anyone else should treat any type of bipolar, depression, or mental health issue.

Seroquel is not an acceptable med for sure…. FOR ME!

I’m now on Lamictal for the depression, staying on the Celexa for now, and on Ripresidal when needed if I start getting manic.

An update from this post…. It would seem to be food poisoning (and not heparin reactions!) from some cheese that was out for a bit, we thought it hadn’t been out too long, plus the kitchen was cool, so we weren’t too worried, but apparently it was out just long enough to go bad. I don’t know for sure that’s the cause of the dizziness, but since it showed up at about the point where food poisoning would (within 18 hours, and less than that, just not sure how many, it took for any signs beyond being extremely tired to show up) and since Johnny is also dealing with stomach issues, there is reasonable suspicion that that is what is happening. He’s not having the dizziness with all of it, but I’m having more GI symptoms than he is also, my gut is not as strong as his any day, but pregnant I do worse apparently.

Ok, Before I say anything else I want to make it clear that I never expected pregnancy to be the easiest thing in the world or that I expected to be emotion free – I’m really emotional even without all the hormones in a pregnancy, so of course I’m a mess as a pregnant woman lol. And (as the nurse at WIC said yesterday) with all the miscarriages it definitely makes sense that I’m crying a lot…. any emotion change brings out my tears lol. Happy tears, sad tears, frustrated tears, angry tears, the list goes on! 😛

I’ve spent all day dizzy today. It hasn’t been severe dizziness (usually when I get dizzy spells I’ve got to lay down or I feel like I’ll fall or pass out), but it’s been noticeable that I’m not feeling right! The dizziness wasn’t really there until my most recent Heparin shot (right after it I started feeling dizzy, not like I had to sit down, but just a little bit not right in the dizzy way). I’ve been having dizziness with each heparin shot, today is the first time it’s stuck around so long. Also it’s a different dizziness than I’ve had with the pregnancy, and in the past with hormone shifts. Usually I feel like I have to sit down right then or I’ll pass out when I get dizzy. With this it has been extremely mild and constant, I don’t feel like I”m going to fall over or anything, but there is a constant light dizziness. Midmorning I called my doctors office to return a call from yesterday (about labs) and mentioned I was also concerned about a possible side effect to the heparin (dizziness) and wanted it noted in my record, that it wasn’t a big deal, but I just wanted it in there. Well the secratary freaked out on me and had me talk to the first available nurse, so I did, and I explained I just wanted it in my record, I wasn’t super worried, but didn’t want something major to happen later and not have mentioned this. The nurse talked to a doctor who said “It’s not a side effect, it’s just pregnancy, don’t worry about it.”

I will have to update more later (I’ve got auras happening again, going to go lay down… probable migraine coming on) but basically I was told to just go get checked out at ER to make sure it’s nothing more major and will be doing that in the morning as I have no way to do so tonight. And again – I’m not worried at this point (beyond the normal this isn’t good type feeling, but not major worry about right now) but I will still go get checked out tomorrow like they want me to.

Edit: There is an update here … it seems to be food poisoning and not heparin reaction stuff, though I will be keeping an eye out once I’m past the food poisoning to be sure that it doesn’t continue.

I’m officially on heparin as of a couple of hours ago. The prescription is for two times a day every day for the rest of the pregnancy (and possibly a few weeks after from what I’ve read). Johnny gave me my first shot after lunch. He will be doing the next couple of shots, at which point I’ll take over to make sure I do them right (I’m cringing as I type that), as I’m going on a trip to get Gamer and Duckling for the summer, and although I will be with people who can give me the shots for most of the trip, there will be times when I will need to do them myself. Once I am home again he’ll be taking back over for me as I’m REALLY not a fan of needles and just watching him give me the shot earlier made me feel gross, plus it’s not a pleasant feeling medication, so I do not want to be doing it myself more than I have to.
I don’t think I’ve mentioned this, but my progesterone (prometrium) supplement is $120 for a 30 day supply (at the dose I’m on) without insurance, and our insurance is great for generics, but there isn’t a generic for it, so they are only covering a fraction of the cost, and we were still paying $96/month for it. That was a big stress for us as it had been unexpected at that cost. I applied for a second insurance for pregnancy a couple of weeks ago as I knew our insurance wasn’t going to cover anything (HUGE deductible + really bad insurance) and am on it temporarily (until 7/31), which will hopefully become until the end pregnancy… I have an app in to get it approved to cover the whole pregnancy. I took my paper with my information in to the pharmacy today when I went to pick up my prescriptions (heparin, the needles and syringes for it – itty bitty things, and prometrium) and guess what?!? Although my heparin and needles aren’t covered by the insurance my prometrium was COMPLETELY covered! I can’t tell you how much of a relief that was! 🙂 And my heparin is covered by the other insurance, so it was cheap.
Now for the trip part of all of this. I will be making a trip next week to see my family and friends and to pick up the kids (the main point of the trip is to pick up Gamer and Duckling from their other home and bring them to ours, an added bonus is that they are two hours from my parents and some family and friends, and within 30 minutes or so without bad traffic of another group of my family, so I get to visit with a lot of my family while I’m there!!!). I haven’t talked much about my trip as the whole thing has me really stressed even without the pregnancy, but there it is… I’ll be visiting friends and family and picking the kids up in about a week, then home before Father’s Day.