brightlotusmoon: (Asha)
So, my thoughts have been spinning merrily amidst what could be a spiraling episode of... Oh, fuck, probably everything at once. After I had a chat with three doctors about the consequences of stress-related memory loss, I quietly decided to start a private mindfulness therapy, which I have only been sharing with the psychologist, for advice, while I move forward in my own brain to stop my own brain from destroying my mindstate.

Tomorrow, I see my general physician and have her write a referral for the local hyperbaric oxygen therapy center. Although it's a bit premature, as they have yet to call me back about an initial consultation. While I was filling out their online New Patient form, I started wondering if they would even take someone like me, with two dozen illness. Even though cerebral palsy is the cornerstone. I just feel so excited about it. That's a good thing. I can still most of my emotion things.

What I find beautiful and fascinating about my private therapy protocol is that almost nobody believes me. I have been stuck in something insane since 2010. Why would they believe I would "get better" now, so many years later after therapy and medications and meditative exercises? Then again, none of them have been in long term therapy or medication. It really does take many years to spur a change this massive. Hence the secret protocol, which includes a possible medication update and potential oxygen therapy.

I don't expect anyone to believe me. I don't expect anyone to believe in my desire to change with this therapy protocol. How could they? Why would they? I am the same as I was when symptoms started. But I don't want their belief. I don't really want support if there is no actual active knowledge. How can you say "Hey, I've been there, I get it, fist bump in solidarity" unless you really have gone through a similar structure of treatment repeatedly for a grab bag of illnesses that mindfuck you for no reason?
Actual legitimate question, BTW.
If you're also a parent of someone with interconnected psychiatric and neurological disorders, I would love input, because when I try to explain these things to my mom who only has hereditary ADHD controlled via lifestyle, my emotion-brain starts shutting down so my technical-brain can word at her, and I know she wants less science and more human. I'm trying. I just cannot get past that very protective mental guardian who shields emotion-Joanna from Outside. And oh, as much as I love Serena, she feels it is easier and gentler to let me sleep while she and Koan the calico kitten organize and compartmentalize all the Me. Ananta works hard enough balancing out all the neuroweird that Alicia in my private epileptic Wonderland can't reach. I haven't had much success in psychically merging with Asha. We are working out my dissociative and depersonalization episodes first.

I will do this. It will happen. Steps have been severely taken. Hard to talk. But if you think you get it, I would love a discussion via Private Message. I am willing to reveal bits and pieces of my Rebuild Joanna Brain Project to acquire tips and advice from those who get it.

Now, see, I view many people as family beyond my blood family - who shall remain the besy family I would want. Various people in my social circle - friends plus family - have always stood with me. I will always need and want that. But for those who are truly normal and looking at me with confusion, puzzlement, exasperation, fear, anger... and the type of condesencing that means pats on the head, chuckling, and "I love you sweetie. Of course you'll change." "You do nothing. You never help. You are too self absorbed, you don't think, you claim memory loss. It is all right, dear. We are used to hit. Just finish writing." Followed by another hair tousle. I'm used to it. It's routine because I am me.
I am not out to prove them wrong, not entirely. I am out to prove to myself that my neuroplasticity really might eradicate the worst of the annoying symptoms.
Maybe this whole autistic ramble came from my hope and excitement over this slow gentle therapeutic process. If loved ones want me to speed it up, I can turn away for a while to meditate.

All I know is that my own husband has been putting up with me forever, and that says something huge.

Love you, LJ family.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
http://www.lifeexpectancy.com/cp.shtml
http://www.scope.org.uk/help-and-information/cerebral-palsy/ageing-and-cerebral-palsy
http://onlinelibrary.wiley.com/doi/10.1111/dmcn.2009.51.issue-s4/issuetoc

"The 2004 study by Strauss et al.9 appears to be the only published article that addresses life expectancy for older persons (age 60+) with cerebral palsy. As is usually the case, persons who are still fully ambulatory have life expectancies that are not dramatically shorter than normal, while those with more severe motor dysfunction have shorter ones."

"Adults with CP experience musculoskeletal problems and loss of function that non-disabled adults do not experience until much later (IOM). A study indicated that 75% of individuals with CP stopped walking by age 25 due to fatigue and walking inefficiency (Murphy). Another study on young adults with CP found clinical evidence of arthritis in 27 % of subjects vs. 4% in the general population (Cathels). These challenges result in chronic immobility, harming bone health. Elevated fracture rates in adults with CP are not well documented, however, documentation in children with CP (Munns), men surviving spinal cord injury (Bauman, 2001A) and stroke survivors (Sahin, Sato) does exist. Immobilization not only elevates fracture risk but also the risk for metabolic syndrome (Zderic)."

'Scuse me, I'mma start researching as much research as I can research about growing older with spastic cerebral palsy.
(Also, I recall when, several years ago, my chiropractor was "very impressed" that I was "doing so well and not yet debilitated" in my late twenties. That should have set off something in my thinky thoughts. Especially since I slid downhill after thirty without knowing a damn thing about why. And people vehemently deny that growing worse after thirty happens. HAH. And hey, I'm a fucking MILD CASE. Seriously, WHAT.)

Also: Dear gods, I've had people essentially accuse me of "lying" or "using negative thinking to make it worse." It is to laugh. No, really. Fuck that. Because this:

"Whilst there is not a wealth of published scientific evidence on the physical effects of ageing and cerebral palsy, surveys have highlighted some of the problems that people encounter. What is clear is that people with cerebral palsy age in the same way as non-disabled people (primary ageing) but some people with cerebral palsy may also experience secondary ageing effects. These are likely to be the long-term effects of the original impairment.
Below are some of the more common problems reported by people in their thirties and forties or, sometimes, a little earlier.

Increased levels of pain and discomfort
Osteoarthritis (pain and stiffness in the joints)
Increase in spasms
Increase in contractures (shortening of muscles)
Less efficient motor control (body parts involved in movement)
Joint problems
Tight muscles
Gastro-intestinal (digestive system) problems
New or increased back pain
Emergence of or increase in incontinence
Loss of joint flexibility
Reduced energy levels and fatigue"

"Many people with cerebral palsy push themselves to their physical limit and thus have little in reserve. Consequently, recovery can take much longer following an injury or illness and, unless there is a rehabilitation programme following the injury or illness, recovery to previous levels of functioning may be slow."

I know that most people have no idea where their fibromyalgia came from I know where mine came from.
So, you know. WAARGGHHARBL and all. I've mentioned I keep looking for NIH studies so I can be a guinea pig, right? I mean, NIH is, like, a 20 minute Metro ride away.
brightlotusmoon: (Default)
Oh, now, this is brilliant. Goji berries and acai berries do contain the proper amino acid blend than helps maintain healthy youthful skin. I was right. So, technically, if you take the oil or extract of goji or acai, and combine it with, say squalene, hyaluronic acid, MSM, alpha lipoic acid, CoQ10, and certain plant and fruit oils, you really could make an skin moisturizer that actually would slow and smooth the symptoms of skin aging to some degree, depending on the individual. Vicki, it looks like our idea for the Psyche Lotion really was spot on!
http://www.perfectoils.com.au/goji-berries.htm
http://www.biossential.com/amazon-thunder/acai-articles/acai-berry-information.htm
http://www.happi.com/articles/2008/05/amino-acid-skin-care
I are Research Lady.
brightlotusmoon: (Default)
Migraines linked with brain damage

*looks at brain*
*sees that brain is already damaged from premature birth and neonatal oxygen deprivation*
*remembers trip to Las Vegas where brain felt more awesome/alive than ever, seriously (dude, they pump oxygen into the casinos and hotel rooms)*

*nods*
And there we go.

*nudges self*
Dear Self,
Mom sent you magnesium and feverfew for a reason. Take them. Seriously. We mean it.
Love, Brain

Other supplements used to prevent migraines:
Omega-3, CoQ-10, MSM, B-Complex, Fenugreek, Butterbur, Silica, Turmeric, Ginger, Cat's Claw, 5-HTP, Bromelain, Valerian, Passion Flower

Apparently, most anti-convulsant drugs can also help and are being prescribed off-label to migraine sufferers. Trileptal has some success. Well, then. I should be okay if I take care of myself and keep doing what I'm doing (but I refuse to give up chocolate, ever).

*pats brain*
Nice brain. Be good.

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