Wild-Heart.net

For those of you close enough to have read the now temporarily defunct other blog, you know we, as a family have been through a whole lot of hell with Baby Boy since December of last year. The short of it is that eventually he was diagnosed with severe early onset schizo-affective disorder… two weeks prior to my mother finally being diagnosed with the same disorder. I feel like it’s something I’ve been dealing with all of my life in caring for others. But when it’s your own child, it’s something else entirely.

This came about just as I finally won my 4 year fight for disability. During those years I was without medical coverage. As an asthmatic with diastolic heart failure as a result of giving birth one too many times while having pulmonary stenosis and ventricular incompetence, I knew better than to let a sinus infection or bronchitis go untreated, but I did on more than one occasion which led to the development of COPD.

Myself and my children are extremely sensitive to stimulants of any sort. They tend to make us a bit manic. Add the stress of what we’ve gone through with Baby Boy and the addition of COPD medications, which are all stimulants  and I became a ball of manic anxiety. It got to the point that 1mg of Xanax taken 4-5 times daily didn’t settle my nerves. Not even the additon of an antipsychotic mood stabilizer did the trick.

Baby Boy and I had our monthly appointment with the neuro-pyschiatrist on Friday. He was finally able to review my lumbar MRI screens and devise the best pain/anxiety/and mood treatment to give a try. So now for me it’s 5mg of Abilify 2x daily, 2mg Xanax 3x daily and 50 mg. of Tramadol at bedtime. I now sleep at night. Since starting the Spiriva for COPD two weeks ago, I had been fighting insomonia to no avail. Not even Melatnonine would knock me out. Nor Benedryll.

The numbness in my thigh isn’t bothering me nearly as bad, my daily migraine had disappeared,  and I haven’t been this relaxed in years. Sure, I’m still up tight. But nothing like I had become after watching my child lose his mind six months ago. The Tramadol is also supposed to help the Fibromyalgia and while I cannot say that I am pain free, I can say it no longer is taking me 3 hours to get moving every morning.

So far, so good. Mellow is good.

• My nest is half empty pushing my anxiety level to new levels. Some may think that the years in which I did not have physical custody of my bio-boys was fun and easy. Little do they know me. It left me with an irrational fear of being separated from both my bio-boys and my bonus-boy.
• Baby Boy continues to struggle for stability. Friday I finally had an opportunity to speak with our family psychiatrist about this without him being present. The consensus being, severe early onset of schizoaffective with the major problem being, due to his previous hospitalizations, he tries very hard to maintain a facade of not letting anyone know when he is struggling with the auditory and visual hallucinations resulting in an increase of stress to maintain that control which triggers the mania aspects. The doctor said that he has one of the most severe cases of early onset he has seen yet also shows the most uncanny willpower to mask it and attempt to control it that he has ever seen. We also discussed this being the last time we try a different atypical anti psychotic. If this med combo doesn’t work, it’s time to pull out the “big guns” of the older and more potent schizophrenic medications.
• Had a lumbar MRI six weeks ago which revealed degenerative disc disease with two discs being fused with calcification spreading up the back of the spine and one disc bulging. This explains the lower body neuropathy and neurological symptoms but not the tremors in the upper extremities and decreasing fine motor skills. Waiting for a referral to a neurologist to make sure it’s just the fibromyalgia and not something else co-occurring.
• On Memorial Day I made the best smoked/grilled chicken ever. I also ended up with heat exhaustion from being outside all afternoon in the sun and the heat from the grill.
• Joseph is on vacation this week. The goal is to finish painting the interior of our town-home. The kitchen is half done. I’ll attempt finishing it tomorrow while Joseph works on patching holes throughout the rest of the house. When we’re done, the property manager claims new sub flooring, carpet and linoleum will be soon to follow.
• Father in-law and his significant other will be visiting a week from Sunday. We haven’t seen them since our wedding. It always throws me off guard. Joseph is a carbon copy of his father… only taller. His father also has the most unsettling way of looking a person straight in the eyes in a way that leaves one feeling that your soul has been left completely visible to him… It’s Joseph with age and wisdom. Lord, what a future Joseph and I have if Joseph also gains that much of his father in years to come.
• My last living grandparent is failing. She had the beginning stages of renal failure and was refusing to eat. She seems to have improved a great deal and I’ve been told that she’s came out of the renal failure. Her birthday is Sunday. I have to try and find a good time to call her this week. She keeps asking my parents, “When is my girl going to call me? She’s long overdue to call.” Thing is, having Nate home full time since his last hospitalization has left me with little time for luxuries such as long phone calls. And Grandma always talks with me for a very long time, always at least an hour and a half. Thank the gods for unlimited long distance!
• Boy #1 is now 5′ 9″ and only 15 years old. He just might grow into thoe size 12 feet someday.
• Boy #2 is now 14 and lord help my sanity. His personality is that of a great-uncle that while living, lived to keep drama going in the family. He carries a giant spoon with which to stir the pot at will.
• I’m a horrible mother of sons. While I enjoy them more the older they become, and the teen years aren’t quite as horrible as I had feared, the voice changes that boys go through is akin to nails down a chalkboard. There are days that I dread waking up as I know it will be followed by Boy #2’s forever changing and croaking and screeching voice.
• My mother will be here for my birthday this year. She will be arriving two days prior. She wants to meet Joseph’s family that lives here in GA and has suggested that my birthday should be the day. I’m more inclined to simply leave her to supervise the children and take a night away from home in a local hotel. Alas, between my mother’s wish and those of my neighbors & friends it will likely be that I play hostess for my own backyard birthday party.
• Bonus Boy is insistent that he wants to be here for the entirety of my mother’s visit and has begged Joseph to please ask his mother if he may stay with us the entire 12 days instead of just the 7 in the middle. I won’t hold my breath for that one.
• Sunday, the boys and I watched an older movie that has long been a favorite of Boy #1’s which he hadn’t seen a few years, 8 Seconds, the story of bull rider Lane Frost’s life. Boys #1 & 2 and I followed it with an older Julia Roberts movie, Something To Talk About, simply because, while it’s set in The South, it reminds us so much of life “back home.” Not to mention Robert Duvall reminds us so much of my Dad.
• Boy #2 has enrolled in Time4Learning for the summer with his goal being to complete 7th grade curriculum this summer and then take a grade placement test when school starts back in August. If he completes this goal, having seen Georgia’s mandated curriculum requirements for 8th grade public schools, he just might end up placed in 9th grade… There is that much of a disparity and that much lacking Georgia public school curriculum.
• Boy #1 wants to try to get accepted into National Guard Youth Challenge as soon as he turns 16 in January. I’ve been working with one of their mentoring coordinators to find a qualified mentor here in Macon that is willing to at least meet him so we can get the ball rolling. Last week, I dreamed of his wedding. It was unsettling to say the least but reassuring just the same. He later told me that when he is done with NGYC his goal is to join the Marines. Which made the fact that in the dream he was in full Marine dress uniform for his wedding, a bit more unnerving.
• I wish I was more tolerant of having two teenagers with two different musical preferences in my home. Honestly, I have to hand it to my parents. They rarely complained when my sister had her music blaring from one side of the house and I had mine baring from the other. In their shoes I would have gone completely insane.
• I think I’m finally getting sleepy. I’ll attempt something more interesting and upbeat tomorrow.

Ciao for now.~

I just spoke with my baby boy’s attending doctor at the hospital. We discussed his medications and the changes and accompanying psychosis and anxiety. He is stopping the Depakote as his levels are too high regardless of what dosage they have tried and are going to start weening him off of the Geodon since its side-effect of poor memory recall contributes to his anxiety. Today they are also going to start him on Neurotin to see if that eases his anxiety. We also discussed the possibility of starting him on Lithium while he is in the hospital. He said it is actually one of the safest medications to use in patients with mood disorders, even pediatric patients. I asked why it is always used as a last option. He said that the frequent blood level testing is the number one reason that most parents don’t try it before going through every other antipsychotic, most parents do not want to have to mess with frequent trips to the lab.

You know, I try to never judge what other parenting choices that other parents make because unless you know every single nasty detail of their lives, it is simply not fair. Every family is unique and so is every child. I’m trying very hard to understand why, when nothing else is working to preserve your child’s sanity, any parent would hesitate to try a medication with the safest side-effect profile that has the best track record of helping children & adults. Why? I don’t ask that sarcastically. Not in the slightest. It breaks my heart and I would really like to understand this way of thinking. If a child were diabetic, would a parent refuse to monitor their blood sugar 4-6 times a day and administer insulin injections? I wouldn’t think so.

I understand that most HMO’s don’t like to give prior-authorization for medications that require frequent lab testing in an attempt to keep costs down. I “get” that. Honestly. But why not fight tooth and nail to save your child?

And speaking of diabetes, the doctor said they would check his fasting and non-fasting blood sugar levels today and tomorrow. His blood sugar was a bit on the high side when they did labs at the ER. The only thing he had ate in a five hour period, about 30 minutes before the labs were drawn was 2 graham crackers and 2 tablespoons of sugar free peanut butter. He said that in some patients who take antisycotics, the meds can cause high blood sugar levels and when blood sugar is high it can induce psychotic behavior in some individuals.

The more depressing stuff is after the “More” tag/link. It’s my journal and my therapy so if you don’t want to deal with that, feel free to not click it. I won’t be offended in the slightest. And if you’re reading this in a feed-reader, just go ahead click onto your next updated feed.

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I have one word for you: Xanax.

My youngest (nearly 9 yrs. old) has early onset schizo-effective disorder. It’s been a bit of a hell lately but is gradually getting better. The result of the stress of that situation sent me into a tail spin of anxiety, which of naturally triggered a bad fibro-flare. Went to see a neuropsychiatric specialist. I figured it was time to ask for help when my natural ability for parallel thought added paranoid connections between random things. Wouldn’t want crazy to get too out of hand, you know? So he started the process of a neurological work up and various other boring and dramatic things and he got me started on Xanax.

Let me tell you something first, my mom… she’s been taking Xanax like a fiend for about 13 years. Just the thought of having to take that stuff gave me yet another stomach cramp of anxiety. But I agreed to give it a try..

Wow!

I haven’t felt this clear headed and peaceful since I was maybe 17? Gosh that was a beautiful night. You would likely rather I skip that part but it was such a beautiful experience and the last time that I felt connected to life in such an peaceful manner. It was a mid-July evening in Iowa. One of those not to humid nights when the breeze is just right. Think of Meryl Streep on that farm house porch and she turns to face the wind and the look of pure contentment that is on her face. Oh, how I have grown to miss Iowa. But that’s getting off track and I’m sure you’re starting to get confused if you’ve managed to read this far.

I love my shrink and I love Xanax. I’ve still got the usual minor fibromyalgia things going on and the neuro quirks, but it’s as if I couldn’t be bothered to worry. And this is coming from me, the chick who just  spent 3 days awake and worrying herself into paranoia. And I’m remembering things today that used to give me joy and I’m excited about getting reacquainted with myself. I didn’t think I’d ever see that side of me again.

Hell. While fixing supper this evening, I felt as chipper as Barbara Streisand did while skipping across that college campus singing to the flowers to make them grow. (Bonus points to whomever can name that movie right off the top of their head. )

Which reminds me. I’ve been having this urge to NetFlix some Cary Grant movies, Giant in particular. And Doris Day movies. OH! And Elvis’ Hawaii movie which of course means I would also need to watch The Fabulous Baker Boys. I adore that movie. I know, it’s not the right time period but just has that nior feel to it and I love the soundtrack.

Sure, I still walk like an crippled old woman and twitch all over now and then and stink of Ben-Gay. But today, I didn’t care.

Sure my baby boy still was spouting prophecies of some other world known only to him and spent a lot of time yelling at me about horrible his day was and followed me around the kitchen telling me how to cook. But today, I smiled and sweetly was able to deal with that without constantly feeling like I was going to vomit.

I sat outside this afternoon, just enjoying the sun for the brief moment it was appearing from the clouds, and remembered being 4 years old on the first very warm day of Spring in a sun-dress and white strapy patten leather sandals with my sister dressed in matching clothes and shoes, playing Ring Around the Rosie with white clover crowns on our heads woven by our mother. Spinning ’round and ’round and smiling with the most perfect, innocent joy and collapsing dizzy and giggling into the grass and watching the clouds pass over. I think I need another moment like that. Do you suppose 34 is told old for Ring Around The Rosie?

So. Yes. Go Xanax!