Yeup, it's Wednesday.

I woke yesterday to no internet, and literally felt like part of my world had fallen into a black hole. That's horrid!

But I: as usual, spent two hours trying to fix it, and finally told myself to quit. Some of my insiders don't get the concept of giving up in any shape or form, so that was a real struggle. But we finally closed all three computers, and said: "It's a husband thing."

Husband, again: as usual, took 15 minutes and had everything working. I could have screamed....he did the same stuff I did, then pushed some magic button and voila! it's fixed........The guy is huge, bends steel all day, is covered in concrete, and pushes one button. Okay, so he also changed diapers very tenderly.......you never really know what's hiding underneath all that muscle when you get married.

So, I find, I don't know: 60+ emails waiting for me. Forgive me everyone, but I had to just scan each of them, as everyone had replied and it appeared that no one was left hanging without a reply at least. The subjects are true to DID, Dr. Phil had already started an upset on another forum that I write on, where the mods stepped in and said "enough"....but he triggered someone who felt that THEY had the background to diagnose everyone. Ooooops, don't do that, it's not cool.

I was "smart", which occasionally happens in my world, and skipped that forum for the days around his show, as I suspected there would be fall out. Hey, that's what MY therapist is for.......I hate quoting scriptures, but let's just call it a "saying".....something about removing the rafter from your own eye before removing the straw from someone else's.

Anyway, that was before I saw my pdoc on Monday. He upped the boys medications: yeah, as it was needed, and he really is a spot on, honest doctor. Then he LOWERED mine. No problem, found out (for those who have been here a while, remember that I've been very, very cold, dizzy, very painful joints, ringing in my ears, and losing hair? Oh, forgot to tell you that I also acquired the lovely condition of black hairy tongue......so I had hair where I didn't want it, and was losing hair where I did want it.....fun huh?) Anyway, this pdoc freaked when he noticed the amounts of medication I was on (and yes Marcus luv, you told me to get a second opinion on the meds!!! I did...) and said the amount of Citalopram alone was off the charts and had never been tested let alone approved in humans. (Oooooh, I'm a human!) Long story short, he's been reducing slowly all the meds......this last jump was a big one, 20mg, and no more black ugly tongue, I am keeping my hair, my knees don't hurt anymore, and the only draw back is I'm dizzy as can be, but that will pass. Apparently, as he explained it, when you take as much Citalopram as my UT pdoc gave me, then the medication messes with your heart, and your entire circulatory system goes haywire. FUN!!!! Just glad my knees don't hurt, and my tongue is pink......but the dizzyness is worst than morning sickness. I feel like I've been on roller coasters all day.......So, moral of the story: listen to Sir Marcus and get a second opinion. Geesh, no one said anything about my heart.....just what I need. I'm actually feeling warm now, and hey! I'm in TX....not exactly supposed to be wearing sweat pants, socks, sweatshirts and sleeping with a heavy comforter.


So, I'm dizzy from less medication, the boys are sleepy from the doubling of their medications, and we are having a contest today to see if it will be one page of homework or three? So far the votes are 2:1 for one page of homework. Darn.....no tie breaker. Hey, I make the homework, so I can make it anything I want even if it's one page. We do a mixed form of home school: part "regular school" and part what is called "unschooling". It basically is school, but they don't know it. The foundation is to accommodate special needs and really works. Requires a lot of thought before hand, but with a few helpful forums and a lot of research, it's relatively easy to do. So, they are hyper focused on whether it will be one page or three, as they don't feel good from their medicine changes, when they normally do 8-13 pages a day. The reality? They still are doing "school" all day today. They just don't know it.


Aramis refused to see the pdoc at first......said he wanted me to talk for him. The pdoc was surprisingly understanding and said it made sense.....what 8 year old wants to hear the specifics about his schizophrenia? But we brought him in at the end, and just had positive conversation about how well he is doing in school now.....and the pdoc explained that it's because of his medication. Why it's being increased now, and what will be happening over the next few weeks. He (son, that is) ended up going from frozen in place to smiling......which is how his visits should feel: positive, not focused (while he's in the room) on all the auditory and visual hallucinations, let alone delusions. It really freaks him out to hear these things discussed. It's "okay" to tell momma, but to talk about it with the "Big Doctor" is embarrassing. Doesn't matter if you're 8 years old, you still want to be viewed as a capable young man. Other boy is being watched gently for schizophrenia too, but for now, it's his worries that are off the chart. He actually asked for an application to work at McD's to "help out"......he's 9!!!!.......the pdoc said he's waaay too young to be worrying over such a long list of things. At least he's articulate and was able to get his message across. However, pdoc said he has doubts this is the "right" medication, so we'll have to check back in two weeks.


Husband has admitted that he's more like Aramis than Dante....and has heard and seen things his whole life that he's been afraid to tell anyone. I know, he told me......but this is something the doctor needs to know. He finally agreed, and it will be addressed. I am so very proud of him for not being afraid of "the schizophrenia", and hiding or denying it anymore. It is what it is......treat it. So much better now that he's simply accepted it as a part of life......it happens, so are you going to do the ostrich thing or address it? Only telling the pdocs about PART of your symptoms leaves them in the dark, and they can only treat what they know about. Most pdocs just want to get the father figure stable and back to work. Our pdoc said that his age group has the highest amount of meth use, so they were simply relieved that meth wasn't an issue. But, now that the bigger picture is being filled in, much more makes sense. The constant worry? Well yeah, if you are hearing and seeing threats that aren't there, well ya' think the person might worry?

It really seems that "mental illness" had such a stigma in our parents generation. I mean, on both sides of the family there were members who were actively schizophrenic, and were both made fun of and ignored (strange, strange dichotomy). "Let's just hide them away, and not talk about this.....". Hey, it doesn't work.......really, it doesn't work.

Strange thing too? My therapist filled out a form for the government that was rejected. So, they asked that the pdoc resubmit the form with his credentials. I didn't really read the first form, too many things were going on. It was just "another form" that the disability and student loan people wanted. Woah, my pdoc read it and said: "Are you aware that your therapist has you described as completely incapacitated? This says you can't stand, sit, walk, or function in any way! I disagree....you're one of the most lucid people I've ever met. I'm not comfortable with this, and am putting the truth down." Okay, so I'm dx as DID, PTSD, and Mood Disorder, but with medication operate daily just "fine". However, I have two "children with serious mental illnesses that require my constant supervision". Hmmmmm, a completely different form going into the government. He said no one can function running the family the way I do, publish a book, write a second one, and keep everything together and fit the first description.


No wonder there's so much confusion when it comes to insurance, disability and dx's. Shoot, even I thought it was strange, that basically I'm still working as a Social Worker for my children, albeit unpaid, and yet am declared 
"unable to return to work". Well, that just got changed.....apparently I can return, but it isn't recommended NOT because of the DID, but because of the children. Hmmmm, I asked him about the Social Work arena being filled with triggers? His reply? "So......there's triggers everywhere, and you manage them. You know your supports and you use them. You aren't using unhealthy crutches, and you address things as they arise. Where's the problem? You know you're DID, I know you're DID, but you've been following treatment how long? I don't see you as incapacitated at all. I can't agree with this original form." I asked about the occasional cutting? His reply? "And how fast did you get yourself in here? What was it? 2 hours? You also reach out to supports, frankly, you've informed ME about more DID support than I realized existed!"

Hmmmm, I guess he's right. For months now, I have lived on the second floor, with a 98# man who lives upstairs, and yet must be an ex-marine. He stomps everywhere...night and day. Literally, it sounds like my mom when she's angry, and used to really get me going. Now, as it happens every day, constantly, I have slowly become desensitized to the sound. Sometimes, I still think: "uh oh, mom's mad......no wait, she's in California, and this is TX, and I'm 40!!!" That's it.....literally it has become almost a non-issue. I KNOW it's the skinny man upstairs, who is rather nice, and little by little I've began to connect the mental image of him with the sounds of the footsteps and not my mother.

Well, I should write on my blog, and I should put together part of Book II, as I have the rough draft for another chapter and a rewrite already prepared, but frankly: the words are swirling on this page as it is. I'm going to give the dizziness a few days to adjust......and be grateful I'm not nauseous to boot. Just dizzy.......if I don't move my head too fast, the world stays pretty slow moving. Turn quick? and the whole room spins.......

They told husband not to worry about work, he's on the permanent staff, and he's doing great. On top of that, word just spread about what he's been dealing with as far as son is concerned, and the company (being family oriented) was blown away. That man can literally focus on work, and does a really good job of leaving "home" at home. However, they fired another guy, and told him to move out in three days. Hmmmm, this company is not one to get on the bad side of. I'm proud of husband, he has truly matured from the man I first married into someone who can face so much more in life. Frankly, just being honest with the pdoc has taken a huge burden off. It helps him to be very understanding with Aramis as well, especially as he can relate so very much, but no longer feels like he has to be embarrassed by these things. In a way, he too thought that I would view him as "less of a man" if I knew.....but the reality is that he's told me......I've heard, and I've seen too much to be surprised. The only difference is that HE is admitting it now.

THAT has really got to stop.....the stigma and embarrassment. No matter what the condition is, just because it's "in your head" doesn't mean it's any less of a problem than a physical condition. They both need treatment, support and recognition. But that's my soap box, and I'll step down now.

Well, the girls are scrambling for who gets to write first......better grab another cuppa and give them their time.

Take care everyone.......don't let the Dr. Phil's of the world get you down. These people exist, but we still have the power to decide who to let into our lives and who not to. We don't have to accept everything that we are told.....if we've learned anything from survival, it should be that core thought: we have the capability to think for ourselves. Old messages and manipulations can be ignored.

Have a good day......

Shelly

 


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    Shelly Dowen-Johnson

    I am currently traveling with my husband across the United States, due to the nature of the work he does. 

    I am the mother of two boys, one who has recently been diagnosed with Early Onset Childhood Schizophrenia (Schizoaffective Disorder). 

    It appears the Dowen family gene sequencing contributes much more than the darling dimples both boys have inherited!  But, as always, with love, tender care and support....we will thrive! 

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