June 2011

Today is the day of… interesting things. The truck kept stalling for me (just has to have the part that’s already been ordered put in), and Mom had to come get me from the town I was stuck in, which is bigger than where we live, and I was there for some appts, and play with the part we’re replacing, then George got herself stuck in a tree, then Mischief was left outside by very sedated me (the reason I’m not on Seroquel anymore is because of the fact I’m sedated without the positives) and I had to find him….. I think I’ll stay right here until bed time thank you!

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.

I know I’ve posted Lily pics in the past, probably even the ones I’m posting now, but I share them every once in awhile because I like to have her on the front of my blog (I know there are other ways to make that happen, but this is how I do it)….

I just want to show my beautiful daughter again, and remind people SIDS is a real determination of COD, and it does happen… more often than anyone wants to think of.

There was no reason to think Lily would die, let alone at 13 days of age, and there was no reason found, hence the SIDS determination.

Bipolar is part of our lives intimately and officially.

I say intimately because I have other family members who are bipolar (have bipolar? how do you even word that?) so it’s already been part of our lives, but it’s now a much bigger and deeper part.

I saw my psych doctor yesterday, they got me in on an emergency visit with a cancellation because I’ve had more issues with the Seroquel, and have been having nightmares and such, so something needed to change. This was the first time I’d seen her since my manic episode the other month (well, depressed/suicidal, manic, depressed, back and forth) as I’ve been seeing her nurse the last few months. My Psych agreed with me that it is in fact bipolar, and not just other meds mixed with grief and PPD. Definite, clear manic and depressive cycles. Even on meds, though they aren’t as severe, they still happen.

We took my dose of Celexa down as antidepressants can cause mania to be more severe, and cut my seroquel dose in half. If I haven’t improved by Monday next week we’ll be changing my mood stabilizer. Hopefully one or the other will work, and I won’t have to try to find a way to change my meds again while we’re out of state with the kids.

Figured out the cause of my migraine….. I had been thinking since the gum was aspartame free when I bought the first packs at the start of last summer, that they hadn’t changed the ingredients in just a couple short months……. guess what….. they did. 😦 So my gum chewing is at fault. 😦 I HATE aspartame!

At too high a cost, but Still!!!!!

Yes, I have a migraine… as soon as the meds I took to knock myself out again take effect I will be going back to bed.

So… migraine super powers – super hearing and super sight…. I can hear things I normally can’t…. and….. I can see in the (mostly) dark a lot better than normal…….

I’d trade my newly found super powers to be free of this migraine though. 😦

This blog has become so much mroe than it originally was planned to be, and I really need to get back to working on it now that I finally am feeling more like myself again, and feel like my life is a bit more mine rather than Grief’s finally.

I want to write more about Babyloss, as I have felt for a long time, and feel even more strongly now, that it’s taboo and really shouldn’t be.

I also plan to do more writing about my health issues, not just from my experiences, but getting better info out there.

My other plan is to write more about sex ed, as I feel there is a lot that just isn’t known… I have friends and relatives who ask me questions about infections and pregnancy and things, and that knowledge needs to become more mainstream. Also about anatomy and how the body works, as I’ve only really started to understand in the past 4 years or so, and even now I’m still just scratching the surface, and these things really need to be understood!

And, I’ll likely write about sex and chronic illness and pain, and about sex with my specific health issues, and those posts will include personal things…. don’t worry, I will make it VERY obvious when those posts come up, so that no one who doesn’t want to know the more intimate details of our sex lives won’t have to…. this is something Johnny and I talked about a couple years ago and I’ve just never gotten around to… and I REALLY want to do those posts, as I feel these issues aren’t talked about enough!

Some experiences lately have left me with thoughts that I want to share.

For me (and it seems for most parents who’ve lost their children) talking about my child who isn’t with me anymore is just as special as talking about my living children. I love to talk about Lily. I will change the subject for people who seem uncomfortable with it after I mention that she died, but if given the chance to continue the conversation past that point, I will talk as long as I can. Yes her death, and talking about it, is extremely painful, but her life…. she brought so much joy in the 36 weeks I was pregnant (and so many other feelings and thoughts) and so much joy during the 13 days from her birth to her death, that I want to share her.
Right after she died it was hard to remember those times without breaking down and crying because I missed (and still miss) her so much. Time, even though it’s only been a few months, has done an incredible job healing me already, and letting me start to remember those days much more happily, as I realize that life is continuing, and it hurts, but there are also happy moments again.

Religion – A child’s death seems to have a bigger impact on people’s faith (especially the parents and siblings) than any other death….. not that other deaths aren’t hard, but children’s deaths are something that in our culture we work hard to keep children from becoming ill, let alone what we do to keep them from dying…. death of children, and unexpected deaths seem to be the hardest for faith. Saying that God took their child to a better place may be seen as insulting as far as their care of the child, and saying that the child is in a happier place than they were with loving parents may be seen as rude. Saying “God has a purpose” is also extremely hard to swallow… what reason could there be for my baby to be gone?
In our case that last one was even worse because why were we able to carry her nearly to full term, have her come out so healthy and able to go home sooner than some full term babies (we were in the hospital for less than 18 hours total counting labor and everything) only to have her taken? For Johnny and I… we didn’t want to hear anything religious at all… and some parents are like us. Others may find religion even more comforting. Know your audience, and also be aware of the fact that they are probably really struggling with whatever their beliefs are, so even things that they’d normally agree with won’t necessarily get the reactions you expect.

With SIDS parents (and I would guess all Babylost parents), suggestions of what could have been done different, or what you think they did wrong aren’t healthy. I know that Johnny and I (especially me) have gone over our decisions and everything that happened multiple times. And with a SIDS … I suppose diagnosis is the best word… nobody, not the police, not the hospital, not the ME could figure out what happened. There are no answers in that case, but you can be sure that the house and room have been gone through, that the parents have been investigated to one level or another, that there was a full autopsy done, etc. to reach that conclusion. It wasn’t just “oh, I’m tired of doing this, we’ll call it SIDS”…. Johnny and I waited for over 8 weeks to find out why Lily died, only to be given that non-answer, after EVERYTHING was gone over. Pictures were taken of our room, interviews done with us and our house mates, and family members, the police looked through our things, the emergency responders and staff worked hard (for over an hour by the time we told them to stop) to revive her, and when they couldn’t a thorough investigation of her blood, organs, tissue, brain and everything else was completed. And with having donated her heart for the valves, I went through blood work and did even more answering of questions. There weren’t any stones left unturned to try to figure out what happened. And beyond the police, medical staff, etc. looking hard at us and at her, we had our own scrutiny to face, looking at decisions during the pregnancy, and between her birth and death. To suggest we haven’t thought of something, or that the coroner, ME, emergency room staff, sheriff’s office, paramedics, fire fighters, etc. didn’t find something and you know what it was that wasn’t found, that’s just plain insulting, rude and condescending.

An additional thought from Johnny (his other thoughts are already in the post with mine, this is one he just gave me when I asked if he had any)…. Angel Baby is not necessarily comforting. For him it’s not comforting at all, for me…. I don’t believe, even if there is a heaven, that after we die we become angels. We *may* change forms, but that doesn’t mean we are angels. Johnny also says – Just because someone else believes something, that doesn’t mean the person they are talking to believes the same, or finds it comforting in any way. Also (going from the angel thing) – angels aren’t the cute little babies that we’ve made them in our minds….. if you want to know what angels actually look like, provided the Bible is true, there are descriptions in there…. I know I’d rather not picture my baby like that, and I know Johnny doesn’t like that image either……

Spirit babies or something of that sort may be more appropriate and accurate, if there is something after death.
For Johnny and I it’s more comforting to believe there is nothing to come after, that it all just ends. The thought of a heaven where you spend eternity living and praising someone is just as disturbing (if not more so) than hell for us……
Also, this isn’t an open invitation to talk about religion, it’s just us putting words to things that have upset us since Lily died.