A repost of something from last year that I'll need to update:

The full list of prescription drugs and supplement pills.
I do not take all the supplement pills every day; the list is only to remember the ones I have taken in the last year, which is why the list is so long.

Prescriptions:
Ogestrel-Hi
Trileptal
Zoloft
Baclofen
Klonopin
Soma
Ultram
Albuterol


Supplements:
MSM
Hyaluronic Acid
Vinpocetine
Magnesium Citrate
Apple Pectin
Glucomannan
Bamboo Silica
Chlorella
Triphala
Ashwagandha
Neem
Shilajit
CoQ10
Alfalfa
Passion Flower
Valerian
Inositol
Biotin
Proteolytic Enzymes
Yerba Mate
Cayenne Extract
Resveratrol
Turmeric
Royal Jelly
Oregano Oil
Kava
Chromium Picolinate
Mangosteen
Goji Berry
Noni Berry
Cinnamon
Guarana
B-Complex
Ascorbic Acid
Vitamin D
N-Acetyl-Cysteine
L-Tyrosine
Cat's Claw
Devil's Claw
Pau D'Arco
Sea Buckthorn
Goji
Noni
Mangosteen
Moringa
Magnolia Bark
Raspberry Ketones
African Mango

https://www.change.org/petitions/chairman-murphy-and-ranking-member-degette-stop-threatening-the-hipaa-rights-of-people-with-psychiatric-disabilities
To quote a dear friend:
"I am a fully-functioning human being, mentally ill people pose NO greater threat to society than non-mentally-ill people, and we are entitled to exactly the same protections as every other person. Do not discuss these issues without allowing mentally ill people to educate you. Do not discuss these issues until and unless you are aware that mentally ill people are more likely to be the VICTIMS of violence than the perpetrators. Inform yourselves and actually talk to the people involved. Don't bring your own preconceived ideas to the table, call them fact, and suggest policy based on them. That's inhumane AND unlawful."

And I would like to add:
There are very different types of crazy. What I call Hollywood Crazy or Hollywood Mental Illness is usually the kind that is an exaggerated version of a disorder that is seen as a danger to oneself and others. There are people out there so terrified of this that even if they are mentally ill, they will refuse to say anything because ignorant family members might see them as Hollywood Crazy (see: "I am not crazy! I have never been crazy! Don't call me crazy!" often intoned with an air of fear, upset, prejudice.) And in those minds, Hollywood Crazy might mean commitment to a ward or facility, which is often seen as a terrible thing, not a helpful healing thing. We seriously need to change how we view mental illness and mental disability. There are so many people living with a form of mental illness who absolutely refuse any sort of treatment purely out of fear of ridicule, shunning, disconnection from family, even forced unnecessary commitment to hospitals. We need to show them that the stigma is human, driven by fear that breeds hate, and that there is no shame or fear in getting some sort of treatment.

***

Dear pharmaceutical drugs: I know people hate you and think you are poison, but I just wanted to tell you that I greatly appreciate your role in saving my life.
I will always balance you with holistic remedies, allopathic medicine, and whole body treatments. But I will always be grateful for the way you have helped me feel better, and even normal, under certain standards. I am one of those people who rarely experience the various side effects listed - which really, are simply issues reported by test patients during trials, which may or may not actually affect anyone. It took me years to realize that. After all, many, many pharmaceutical drugs were initially derived and synthesized from plants, foods, and botanicals. I am not sure about recent years, but chemistry is chemistry.
I do not participate in the stigma and hate toward you. Of course, I am only speaking for myself and my personal experiences. I know so many people who really have been poisoned and "screwed up" because their chemistry reacted very badly to certain medicines, causing extreme side effects that led to even worse conditions. I cannot speak for them. But I can speak for me. And all I can do is be grateful.
One day, I will taper down until I need only very small dosages of the drugs I am taking. That may be years from now. I will still need to take certain drugs for the rest of my life However, for the time being, I am perfectly fine with the pills I take. I cannot say that for anyone else - I am not anyone else.
I am always sad when I learn that so many other patients cannot handle certain medications or become worse due to negative side effects - that is horrific.
Yet as long as no one tries to convince me personally that my life would be better if I quit all my essential medications, I will nod and agree that we take too many prescriptions as a whole, and that negative side effects can be absolutely terrifying and can lead to worse problems. I wish there were more patients like me, who are are able to handle drugs without intense side effects.
And now I shall take the supplements that I take daily, to help balance the pharmaceuticals. Because the supplements work for me. And that is a completely separate debate for another post.

Oh, hell, might as well do that post now.
Depending on who you talk to, supplements and holistic medicine and alternative remedies are either the best thing and the only thing, or absolute bullshit and placebos. And then there are those who regard supplements as exactly that - supplemental. Alternative. Balancing. No big deal.
I grew up on vitamins and supplements, only being given pharmaceuticals when necessary. Now that I need to take over half a dozen pharmaceutical pills daily, I balance them as best I can with vitamins and supplements.
There are plenty of sick patients who are physically unable to take supplements and alternative treatments, as their bodies and brains completely reject or don't respond at all to said medicines. Which is why I bristle whenever someone insists that pharmaceuticals are all poison and only supplements and natural medicines are the way to treat illness. Nobody is the same. Everybody is different. What works for me may not work for you. People don't seem to understand this. People may never understand this.

And here, I submit a full list of every single diagnosis ever made in my life, and here I submit a full list of pharmaceutical medications and supplemental medicines, stored in both my Facebook Notes section and a document in Word.

( Read more... )

And now, time for the daily supplements that I take daily because they work for me.

Because I tend to forget my separate diagnoses, I'm just listing them all here for times when I need to recall them.

-Cerebral palsy (spastic-ataxic hemiplegia)
-Spastic Hypertonia (with spastic hemiparesis and intention tremors)
-Fibromyalgia
-Temporal Lobe Epilepsy
-Asthma
-Raynaud's Disease (primary)
-Sensory Integration Dysfunction
-Attention Deficit Disorder (non-hyperactive)
-Dyscalculia
-Obsessive-Compulsive Disorder (mild)
-Sciatica
-Lordosis
-Migraines
-Non-Allergic Rhinitis (mainly gustatory)
-Anorexia Nervosa (recovering)
-Chondromalacia Patella
-Joint Pain (overall)
-Clinical Depression (mild to moderate)
-Anxiety Disorder (general and social)

I wish I were surprised that the list is so long right now. Let's see if doctors add anything as I get older. Fun!

Because I tend to forget my separate diagnoses, I'm just listing them all here for times when I need to recall them.

-Cerebral palsy (spastic-ataxic hemiplegia)
-Spastic Hypertonia (with spastic hemiparesis and intention tremors)
-Fibromyalgia
-Temporal Lobe Epilepsy
-Asthma
-Raynaud's Disease (primary)
-Sensory Integration Dysfunction
-Attention Deficit Disorder (non-hyperactive)
-Dyscalculia
-Obsessive-Compulsive Disorder (mild)
-Sciatica
-Lordosis
-Migraines
-Non-Allergic Rhinitis (mainly gustatory)
-Anorexia Nervosa (recovering)
-Chondromalacia Patella
-Joint Pain (overall)
-Clinical Depression (mild to moderate)
-Anxiety Disorder (general and social)

I wish I were surprised that the list is so long right now. Let's see if doctors add anything as I get older. Fun!

Anxiety + panic attack + migraine + simple partial seizure = screaming. Followed by a nice dose of Fuck This I'm Cuddling With The Cats.

I thought about canceling Friday's doctor appointment, until I realized that I need it; I'll face the bill later. I need to talk to her about the psychologist, about my anxiety, about my health. I'm not better. I cry in my sleep. I wince in my sleep. I hurt all the time at a higher level than usual. I know I bring some of it on myself by worrying, but that can be worked with.

I will say that the Savella is subtly working in a helpful way, after two months. I have a nice energy boost, a gentle lifting of the fatigue and fog. For a few hours, at least, I feel well enough to notice that I feel happy and content and relaxed.

I've been applying stress relief balms containing helichrysum oil for weeks now. Obviously I need to discuss things with the doctor.

Anxiety + panic attack + migraine + simple partial seizure = screaming. Followed by a nice dose of Fuck This I'm Cuddling With The Cats.

I thought about canceling Friday's doctor appointment, until I realized that I need it; I'll face the bill later. I need to talk to her about the psychologist, about my anxiety, about my health. I'm not better. I cry in my sleep. I wince in my sleep. I hurt all the time at a higher level than usual. I know I bring some of it on myself by worrying, but that can be worked with.

I will say that the Savella is subtly working in a helpful way, after two months. I have a nice energy boost, a gentle lifting of the fatigue and fog. For a few hours, at least, I feel well enough to notice that I feel happy and content and relaxed.

I've been applying stress relief balms containing helichrysum oil for weeks now. Obviously I need to discuss things with the doctor.

Stuff that people have asked about recently:

Tangerine Dream is one of my favorite bands ever. When I was eighteen, I decided I'd collect every single song they ever played. They have over one hundred studio albums, excluding compilations. That is... many many hundreds of songs. Possibly thousands of songs. Twelve years later, I am still collecting.
Interestingly enough, my favorite album is The Dream Mixes One (featuring "Little Blond In The Park Of Attractions Thai Dub" ) -- it's my writing soundtrack.

Having sensory processing disorder is an indescribable thing, because it is too much a part of me. For those who really want to know, I have Type I - Sensory Modulation Disorder, which includes Sensory Defensiveness. I am especially hypersensitive. It came with the package of cerebral palsy. This may or may not have contributed to my mild synesthesia. I tend to annoy my friends with what seems like complaints, but to me they are genuine concerns.

In my skin care routine, my staple ingredients include Tamanu oil, Sea Buckthorn oil, Camellia oil, Grapeseed oil, Avocado oil, Virgin Coconut oil, Shea butter, Green Tea extract, Calendula oil, and Neem oil. Almost all of these ingredients are exotic, costly, and hard to find, which is why Vicki is so wonderful.

If I had to pick just one supplement to take every day, above all others, I would choose MSM. It has honestly helped as long as I am consistent with therapeutic doses. If skeptics tell me it doesn't work, I just shrug and say that it works for me and that's what I care about.

If I could alter one superficial physical trait about myself, I would want to be three inches taller. My actual height has me barely skimming above four feet eleven inches, thanks to the issues with spastic cerebral palsy, lordosis, mild scoliosis, and a left leg that is shorter than the right leg. I would be ecstatic to be just over five feet tall. I envy every person who stands even a hair over five feet.

Some people who hear my speaking voice do not equate it with my size and appearance. They expect me to sound child-like. When I was seventeen, a physical therapist remarked that I looked fifteen and sounded thirty.

Some people can tell that I have mild cerebral palsy just from hearing me speak. The speech problems happen most severely when my trigger points are hit: when I am in extreme pain, or very tired or stressed, or my physical trigger points are hit during a massage. In fact, my husband has told me that I can display symptoms of very severe cerebral palsy if I am triggered, and my seizure threshold plummets and nearly vanishes. This is partly why I must rest when I am fatigued, no matter where I am or what I am doing.

Bed now.

Stuff that people have asked about recently:

Tangerine Dream is one of my favorite bands ever. When I was eighteen, I decided I'd collect every single song they ever played. They have over one hundred studio albums, excluding compilations. That is... many many hundreds of songs. Possibly thousands of songs. Twelve years later, I am still collecting.
Interestingly enough, my favorite album is The Dream Mixes One (featuring "Little Blond In The Park Of Attractions Thai Dub" ) -- it's my writing soundtrack.

Having sensory processing disorder is an indescribable thing, because it is too much a part of me. For those who really want to know, I have Type I - Sensory Modulation Disorder, which includes Sensory Defensiveness. I am especially hypersensitive. It came with the package of cerebral palsy. This may or may not have contributed to my mild synesthesia. I tend to annoy my friends with what seems like complaints, but to me they are genuine concerns.

In my skin care routine, my staple ingredients include Tamanu oil, Sea Buckthorn oil, Camellia oil, Grapeseed oil, Avocado oil, Virgin Coconut oil, Shea butter, Green Tea extract, Calendula oil, and Neem oil. Almost all of these ingredients are exotic, costly, and hard to find, which is why Vicki is so wonderful.

If I had to pick just one supplement to take every day, above all others, I would choose MSM. It has honestly helped as long as I am consistent with therapeutic doses. If skeptics tell me it doesn't work, I just shrug and say that it works for me and that's what I care about.

If I could alter one superficial physical trait about myself, I would want to be three inches taller. My actual height has me barely skimming above four feet eleven inches, thanks to the issues with spastic cerebral palsy, lordosis, mild scoliosis, and a left leg that is shorter than the right leg. I would be ecstatic to be just over five feet tall. I envy every person who stands even a hair over five feet.

Some people who hear my speaking voice do not equate it with my size and appearance. They expect me to sound child-like. When I was seventeen, a physical therapist remarked that I looked fifteen and sounded thirty.

Some people can tell that I have mild cerebral palsy just from hearing me speak. The speech problems happen most severely when my trigger points are hit: when I am in extreme pain, or very tired or stressed, or my physical trigger points are hit during a massage. In fact, my husband has told me that I can display symptoms of very severe cerebral palsy if I am triggered, and my seizure threshold plummets and nearly vanishes. This is partly why I must rest when I am fatigued, no matter where I am or what I am doing.

Bed now.

My doctor is a sweetheart. I went in this morning for my physical exam and Pap smear, and Doctor Carolyn asked how I was, all things considered. I told her I generally felt twice my age, physically, what with [list of medical conditions]. Her face grew more and more empathetic and sad with each word. When I mentioned migraines, she was surprised, since I hadn't mentioned those before. She wrote it on my chart. I told her that the migraines were all tied up with the fibromyalgia and the cerebral palsy and especially the epilepsy. She told me that I'd had had a long hard blow dealt in life but I was dealing with it so well. She moved her hands over my back and torso gently, asking if it hurt at all. I told her that it was all just the baseline fibro pain, and she nodded sympathetically. We went over my list of prescriptions. She was pleased that the Soma was working so well for me three times a week.

I've been dead exhausted all day. I'd forgotten my morning supplement cocktail and realized that I could feel it intensely after leaving the doctor's office. I drank as much green tea as I could all afternoon at work. It helped a bit.

Evening supplements and seizure pill taken. Time to clean the litter boxes. Then I will spend relax time with the husband.

http://well.blogs.nytimes.com/2009/06/04/giving-patients-what-they-want/

The comments here are fascinating and profound.

In general (and to reiterate something I've said before) I do wish people would stop insisting that others do things because "this is how I do it, you should do it too." Not everyone benefits from the same exact thing, be it medical treatment, nutrition plan, exercise routine, lifestyle, way of thinking, religion, or place of residence.

Some people, upon hearing that a friend has an unfortunate medical condition, will stop at nothing to hound the patient with advice. They don't do this gently. They do this insistently, almost in a bullying manner: "If you do this, your condition will greatly improve! Come on, do it! Why won't you do what I say? You're being stupid if you don't take my advice." Having several unfortunate medical conditions, I truly understand the burning desire to help others like myself. However, I suggest suggesting. Gentle offerings of advice, if the other person asks for advice: "Well, this treatment worked for me. Everyone is different, so I can't say it will work for you, but it might be worth a shot. If you do try it, please let me know how it works for you." If the person refuses, I don't press the matter further. I accept their wishes. I don't suggest that the person move to a better climate, I don't insist that the person take a certain medication. That, I feel, would be a type of bullying, and it certainly would not make the person feel better.
Something I have been noticing: In the forums for fibromyalgia that I frequent, many members say that they can't talk about their illness to their friends or blog readers anymore, since people keep using the "bully tactic" on them, or virtually roll their eyes: "Oh, here she goes again, whining about her pain. Why doesn't she just move? XYZ state would work better for her due to its climate. Then we wouldn't have to listen to her complain." The problem is that no two fibromyalgia patients are alike. Some are cold-intolerant. Some are heat-intolerant. Some do very well in humid conditions. Some do better in dry conditions. Some are in between. Some are all over the place. I read these entries in which members say they feel they have nowhere else to turn but the forums, and I want to hug them. Sometimes I wonder if the people who insist and demand are really seeking a way to make themselves feel better by placating the patient.
Doctors, on the other hand, have a good deal of medical knowledge and are doctors for a reason. Some of them are shitty, but in general, most of them know what they're doing. I do wish that there was a better balance between doctors and patients when it comes to deciding what is best for an individual patient. I don't think letting the patient make all the decisions is a good idea, and neither is letting the doctor make all the decisions.