The Return To Innocence

Reposted from Facebook, because dear mighty Isis, I am so exhausted...

***

*giant sigh*

Okay. Before I do this, I must post a disclaimer: This is not directed at anybody in particular. This is not in response to anything anyone has said. I am not upset or angry at anyone. This entire thing, in fact, has been something I have been writing for over a week and have been trying to edit it down to the bare bones. This, in fact, is dedicated to all the disabled and chronically ill people who have been trying to reassure friends and strangers that they and their doctors know what they're doing.

Also, I guess I should add that I am not everybody and everybody is not me. I really don't want or mean to sound snarky, but I've had recent discussions with ALL my doctors.
The neurologist and pain specialist both said in slightly different words, and I quote, "Well, you seem perfectly fine, considering. Sometimes the medications can't hold back every single symptom. That's nothing to worry about. Your breakthrough seizures haven't put you in the hospital. And just because someone on a similar drug hasn't had a seizure in years doesn't mean that your nervous system runs the same way. Don't worry. Just keep taking the pills as recommended, and don't worry about all the horror stories out there. You are you, your body is yours, your brain is yours, and only you know how you will be truly affected. You are on very high doses of medications. Sometimes they may not be affective if you've been under stress. This happens all the time. I'd rather not put you on new drugs or higher doses right now. Just monitor yourself, and try not to listen to people who insist that you need something better. It obviously causes extreme anxiety for you. The only one who knows would be you, relayed to me, and I'm your specialist doctor, after all. So, please try to relax, okay? You're fine!"
In fact, I wrote all that down while I was at their offices in order to transcript it online.

So, I must say this now: Please please do not assume that my health is poor because my medications are not totally curing or stopping my various symptoms. No matter who you are and who you know and what you believe, you are not inside my body and brain, and you are not my doctor, any of them. My most recent blood and urine tests showed that my body is saturated with medications so much that I was told to cut back on one drug from every day to every two days.
I hope this helps reassure you that I really am fine, and that the only help I need is from my doctors. Big Pharma is not always evil. It just depends on the doctors you see and how different drugs work in your own body.

In conclusion: I love you all. I thank you deeply and sincerely for all your concern. But I put trust in my doctors, whom I have known for a long time. I put trust in the drugs that have kept me functioning for years. I know I post a lot about my seizures, my depressive episodes, my chronic pain flares. And yes, Facebook is not a good place for that, because people get the idea that all I do is whine, cry, and throw tantrums about my disabilities. Facebook is not like Livejournal or blogs: It won't be like a record of events. And so, my friends often wonder if my treatments are even working. They are. My fucking gods, they are working. But unless you have the medical conditions that I have, unless you understand my brain completely, unless you are on the types of medications I am on, it is going to be fairly difficult to understand. And so I beg you: Please stop telling me that my drugs might not be working properly. It's not your place to say this. In fact, I will give you this: Email me, and I will give you the names and phone numbers of all my doctors, specialists, and nurses. I will give you the names and doses of all my prescription drugs. You can call all my doctors and voice your personal concerns on my behalf. Maybe they will agree. Maybe they will commend you. I don't know. It might be a fascinating thing. But in the meantime, I guess I will have to cut down severely on what I talk about on Facebook regarding my health. Because I don't know how many more times I can compare medications to levees, dams, and superheroes that can only do the best they can, and I don't know how many times I can explain that just because Person A has been doing just fine for many years does not mean that I am just like Person A. Everybody and everybrain is different and reacts differently.

I desperately hope that this has helped explain things. I know we've all been feeling like broken records. So. My goal from now on is to gradually stop telling Facebook about my seizures. And then I will gradually stop telling Facebook about my fibromyalgia flares. And then the depression. And then all the other disorders. And soon enough, Facebook will just hear about happy things from me. No. That's a lie, and I admit it. I will still post about those things. Because my fellow pain warriors need my support, since we have all already established our tiny support groups. I would be abandoning them. But I have promised myself that I will cut back on public status posts regarding epilepsy, because that is what brings out most of the concern, and I don't want the concern, since it reminds me too much of the fake and nasty online statements of "I'm just concerned for that person's health even though I don't know that person" when it's only an excuse to mock and tease the person. I know full well that it is not what is happening with me, but it happens with many of my friends, and I have a reflexive reaction that makes me want to snarl. I welcome friendly concern, I really do. But please don't force it. Voice your concerns, then back away. I will smile and thank you, and I will continue updating my doctors. That is all anyone needs to know about my health.
Again, if anyone feels offended, please know that none of these statements are directed at anyone. And if I can't be convincing, then all I can do is apologize. This is my life. This is no one else's life.

Also, wow, my hands hurt. That was a lot of typing in just a few minutes. I need a break.

I love you all so, so much. Thank you for caring about me. Just please keep in mind that my health issues are between me and my physicians. Thank you.

Also, I am on slightly higher doses of drugs to ease the migraine, the anxiety, the OCD, the ADD, the potential return of depression and seizures, the spasticity, and the dreaded lumbar pain. So if anyone tries to talk to me, my voice or fingers may argl blarg wagl mluh. Just a little.

Feels amazing, though.

See, this is what happens when a person with true chronic pain takes her medication in proper doses when she actually needs the higher doses that were recommended by doctors. As in, "if you need a second dose, please take that dose, and don't try to pretend you can just push through your major chronic pains, because I have prescribed you these drugs at these doses at these pill amounts for a reason, which is for pain. It's fantastic that you take alternative remedies, but if you need these pain drugs which I have prescribed, you should probably take these pain drugs which I have prescribed, especially at the suggested dosages, and damn anyone who scolds you." (Seriously, this was what my pain specialist nurse told me, word for word.)

As holistic and supplemental as I prefer, I will punch anyone who accuses me of being potentially addicted to pharmaceuticals, since without them I would be screaming a lot. So, yeah, I love you, don't make me punch you. I am still hoping for telekinesis.
I'm off to take some supplements too, by the way. I hope that makes you happy.
 

Oh, hey, specialized physical therapy specializing specifically in fibromyalgia. Look at that. I'll have fun with that on Wednesday. I would love to know what the mocking crowd thinks about that.

Even though it is desperately needed, I hate stretching my neck. I hate stretching my spine. Even though I could probably stretch myself a permanent inch or two. (If I ever break five feet, I am throwing a party. So, probably never, since I'm 33 now.) Here's hoping that my new physical therapy specialist (in fibromyalgia and cerebral palsy) can help me stretch while I drug myself on painkillers and muscle relaxants so my screaming doesn't alarm anybody.

Also, I have an Ace bandage wrapped around my left wrist, arm, and hand because OMG PAIN leaving me sobbing wildly. It is mostly likely from repetitive strain injuries, because in the last few days I have been using my left hand more and more in ways it is not used to. Tonight will be a codeine with acetaminophen night.

The alarm has been set for eight and we plan on leaving around nine, so I must be refreshed as must as possible. I will fall asleep in the car anyway. That always happens. In my purse will be my trusty travel pill container and a small bottle of water. And of course there will be rest stops for snacks and restroom breaks.

I am very excited. And for once, I don't have anxiety that could affect my digestive system or any other part of my body. Thank you, Klonopin, Ultram, and Baclofen, which I did not have the last time I accompanied Adam on a long car trip. I think being so calm, relaxed, and in far less pain goes a long, long way. Because wow.
Anyone who wants to label Big Pharma as pure evil can do so, just not to my face right now. I am way too satisfied to make any arguments beyond "These drugs are helping me immensely and I am profoundly grateful. End of discussion." Of course, I will have my necessary supplements of herbs, vitamins, extracts, and compounds. I always do. Balance and harmony in everything.
I am feeling very balanced and harmonious. Yay. Peace out, all.

Dear Baclofen: Where the fuck have you been all my life? My doctors should have considered you as soon as I was diagnosed with Spastic Cerebral Palsy. But none of them knew. Why did nobody know until now? No wonder the pain specialist's CRNP was so surprised that I never knew. No wonder she gave me a prescription right away and told me to take up to three 10 mg pills a day.
Oh, and also, I love you. I love you very, very much.

You guys, you guys, I am not spastic. I am having no spasms. This is so weird. What the fuck? What's going on? Seriously, why am I not spastic? Why do I have no tremors? Why is my left side so loose and not hurting? This does not feel normal. This is not my normal. Guys, is this normal? Seriously? This is so fucking weird.

I really have to idea how to feel or what to think. I... I kind of feel cheated. Should I have been on Baclofen all this time? This is a really good thing, right?

So, according to what I discussed with the Nurse Practitioner and the Pain Physician, my daily pain pill routine will be: Two pills of Ultram (50 mg each) in the morning, one or two pills of Soma (350 mg each) in the afternoon taken at least two hours apart, and one or two pills of Baclofen (10 mg each) in the evening taken at least two hours apart. And if I am in so much mind-blowing pain that there is no existing scale number, I can take a Codeine-Tylenol on top of it all.
That sounds ideal and good to me. I will return to the office every month to have check-ups and receive physical print-outs of all my prescriptions to take to the pharmacy (rather than having the office just fax everything, since I am taking controlled substances).
This Baclofen thing... I almost feel sad. I mean, did it really take almost my whole life for someone to realize that it was available for me?

We made brownies. We added a few drops of pure undiluted Sea Buckthorn berry oil, whose taste is incredibly difficult to describe. It gives the brownies a sweet, tart, juicy, exotic, heavy edge. Super major power antioxidant brownies are go.
http://montecho.wordpress.com/2010/08/10/a-taste-of-sea-buckthorn/

Adam will leave for work tomorrow, get on a plane to Las Vegas, and spent the next two weeks working at the convention. We decided to go to Tuesday Morning to see about their luggage cases, since Adam goes through them every three to six months. One of the employees recommended a hard-shelled London Fog luggage at a deep discount. Adam will see how it holds up in six months. We went to Grand Mart to pick up a few food items for me, and wound up with organic coconut milk, organic dairy milk, various snacks, fruits, and vegetables, minced garlic, eggs,, beverages, and miscellaneous snack items. Enough for me to have until he comes home.

I have SO MANY BOOKS to keep reading. That in itself will take two weeks. Tomorrow, I pick up the refilled prescriptions from my pain physicians, and on Friday I see my neurologist to bring her up to date on my life, my seizures, my disability winning, my new pain doctor, and seeing if all my brain drugs can be transferred to her for prescription refills. I'm relived that things are falling into place.

Charlotte came to get me for our shopping stuff, and we ate at the Original Pancake House (Eggs Benedict with potato pancakes for her, French Toast for me), and I was finally able to treat us with my own cash. After that came Pepco (with coupons for Nature's Variety and Before Grains dry cat food, plus Soulstice canned cat food, Arm & Hammer cat litter in a 40 pound box, and new metal bowls to replace the cracked glass bowls for the upstairs food). Bed Bath And Beyond was next (a plush new Turkish bamboo cotton bath towel and hand towel just because I could, SteroPod toothbrush caps; I may go back for another Tree Bark bath towel with another coupon, because bamboo is awesome).
Charlotte helped me load everything into her SUV. I lifted one of her 28 pound litter cardboard boxes from cart to trunk, and we were extremely proud. I mean, I couldn't do that last year.
We came back to her house and spent some time, where we chatted about her grandmother's wake and funeral last week. The funeral had been Catholic, the priest made Charlotte extremely uncomfortable and annoyed since he didn't even discuss anything personal about her Nana, and Charlotte made sure to visit her grandfather's headstone as well as the fresh one. Her family even treated her very well, considering that for all of Charlotte's life she had been the black sheep of her mother's family. I, too, miss Nana deeply. What an awesome woman she was. But she had been ready to go, she had stopped fighting the brain cancer and wanted to be with her husband, and she's already haunting Charlotte because she promised she would, so it's all good. Nana's two tabby kittens, Smokey and Punky, are living at Charlotte's separated from the three adult cats until Shadow understands that she is not being replaced and she is still the queen, and that her two children, Buster and Baby, are staying as well. Now, Nana's house across the street will most likely be bought by a cousin to keep it in the family. I know Charlotte wanted Adam and me to buy it but there's no way, especially not now that we've been renovating the townhouse.

When we came back to my house, I got a call from my physician's assistant regarding the Tramadol I had discussed with Dr. Carolyn last week. Dr. Carolyn had approved of my trying the drug but wanted me to get a pain specialist beforehand, who would then handle all my medications and treatments. But I couldn't get through to any of her referrals nor anyone else, and when I finally got one they weren't taking new patients. On Sunday night, I was in such amazing pain that I left a tearful voicemail for the office and explained that I just wanted to try the Tramadol now, and when I finally found a specialist then it could be handled. The assistant, Kevin, told me that he and Dr. Carolyn had gotten my message and had quickly called the prescription into my local CVS; they had known me for a decade and knew damn well when I was serious. Kevin had said that the doctor had been worried and empathetic. Which is why I love her. I thanked him a few times, and Charlotte drove me to the shopping center.
I picked up the Ultram for under six dollars for forty tablets, while Charlotte bought some makeup, and since she so rarely wore makeup I was happy to help her choose colors. Since she is severely allergic to aloe vera in all forms, we have to check every ingredient list of every product that comes near her. It's one of the reasons I started researching holistic skin care. Whenever I know I will be hanging out with Charlotte, I try to use aloe-free products, or if I use products with aloe I make sure that I don't touch her until the products with aloe absorb fully. She gets blistered and reddened, which is the exact opposite of what aloe is supposed to do. The fact that for her aloe causes the very symptoms it is meant to heal is extraordinary. Aloe allergy is not unusual, but it is kind of rare. I myself am very relieved that I can use topical soy.

So, I am highly satisfied. For the first time in years I was able to buy things I wanted freely, with money that was mine from my own bank account, and I happily treated myself as well as the cats. And that first dose of Tramadol, which I took an hour ago, is working quite well! I am in almost no pain, with no foggy or dizzy side effects like those from the codeine. This pleases me so much.

I have all sorts of tea in the kitchen. I mean everything from various kinds of green, black, and oolong to fruity, herbal, healing, antioxidant, and beyond. Moringa tea is fantastic.

The one I keep coming back to is Soap Soleil's Sea Buckthorn Berry Blend Cocktail (Red Rooibos, Honeybush, Hibuscus, Chamomile, Rosehips,Goji Berries, Pomegranate Fruit Powder, Linden Leaf, Orange and Grapefruit powders, Bilberry, Elderberry, Date Sugar,Roses, Natural Sea Buckthorn Powder, Ginger, Raspberry Leaves, Currents, Blackberries, Cranberries, Blueberries).
It's... it's everything amazing. I adore it so. One tea bag is equal to two normal bags. I will put two such bags in a pitcher, boil water, pour the water into the pitcher, and let it sit for hours until it becomes dark red.

One time on Facebook, I exclaimed over how much I love red rooibos alone, and the only comments I got were "I hate roobios, I prefer X tea." Really? Really? Why do people do that? I don't care if you hate my choice of tea, but it's rather rude to announce it on a buoyant post extolling enjoyment.

*shrug* Whatever. Fuck it. I have learned to let it all slide by. Try to walk a mile in my shoes, I will try to walk a mile in yours. But let us keep the bickering to a minimum, shall we? Although yes, one of my pet peeves will always be when people post irrelevant, meaningless, or annoyingly negative comments just because it strikes them. The things people said when I announced I was starting Zoloft last year were unbelievable. There is email and messaging for that, oy.

My visit with my primary physician went extremely well. Their office has been working with medical students, and so I first saw a young man named Greg, who was delighted and highly attentive, even as I apologized for dumping so much information on him about my disabilities and chronic pains. His sympathetic face was true and sweet and empathetic. I wanted to hug him and tell him I would be fine, really, I would get through it. When I said that chronic pain was my normal I thought he was going to offer me a hug. When he helped me down from the table at the end, he held my hand tight and supported my back carefully, for which I was grateful. He'll make a wonderful physician. Dr. Carolyn is extremely down to earth and straight-forward. She is not a strong advocate of supplements, but she supports the idea as long as other doctors, like my neurologist, say it's fine. She and Greg were extremely pleased that I was doing well enough on my strongest drugs, Soma and codeine, with no dependency nor hint of addiction, and they were very irritated that people online have been harrassing me over the drugs I take, like the Zoloft and the Klonopin. Dear self-righteous judgemental humans, brains work differently, and what is mine is not yours, thank fuck.

I need to make an appointment soon with my neurologist, Dr. Debbie, because I have been having so many breakthrough seizures related purely to emotional states along with physical and mental stress. Dr. Debbie will be unhappy and will probably increase the Trileptal. I'd rather stay on it than switch and she agrees; we shall see. Seizures do happen when one has epilepsy and is under stress, despite Dr. Debbie's wish for them not to at all. But that is for another day.

Monday night, my left hand got paralyzed for a bit. There was plenty of feeling but no motion. My brain probably blew a fuse and flickered. Cerebral palsy is a pain in the everything. Also epilepsy. Simple partial seizures and all. Things are getting a little better, plus microspasms and agony. I am fine, just aggravated. Feh, bodies. But I laughed. You should've seen me arguing with my hand. I smacked it, scolded it, cajoled it, etc. The connection between neuro and muscular was lost, so I literally had to tell my brain to tell my limb to do things. What else could I do but laugh at myself.

I have my tea. I have my Lindt Chocolate Bunnies, both dark and milk. I am happy. Adam is working steadily. The cats are healthy and precious. Things are moving along.

Soon I need to hit up Barnes & Noble for a copy of Seanan McGuire's Discount Armageddon, the first in her newest series, which was released this week. I must not forget. I have been waiting for ages. I have been twitching, honestly.

I want to say that I feel fine. So I will. But we know that's not true. "Fine" is just a mask and a cover story. But OMG I Have Tea, and I am relaxing.

I have all sorts of tea in the kitchen. I mean everything from various kinds of green, black, and oolong to fruity, herbal, healing, antioxidant, and beyond. Moringa tea is fantastic.

The one I keep coming back to is Soap Soleil's Sea Buckthorn Berry Blend Cocktail (Red Rooibos, Honeybush, Hibuscus, Chamomile, Rosehips,Goji Berries, Pomegranate Fruit Powder, Linden Leaf, Orange and Grapefruit powders, Bilberry, Elderberry, Date Sugar,Roses, Natural Sea Buckthorn Powder, Ginger, Raspberry Leaves, Currents, Blackberries, Cranberries, Blueberries).
It's... it's everything amazing. I adore it so. One tea bag is equal to two normal bags. I will put two such bags in a pitcher, boil water, pour the water into the pitcher, and let it sit for hours until it becomes dark red.

One time on Facebook, I exclaimed over how much I love red rooibos alone, and the only comments I got were "I hate roobios, I prefer X tea." Really? Really? Why do people do that? I don't care if you hate my choice of tea, but it's rather rude to announce it on a buoyant post extolling enjoyment.

*shrug* Whatever. Fuck it. I have learned to let it all slide by. Try to walk a mile in my shoes, I will try to walk a mile in yours. But let us keep the bickering to a minimum, shall we? Although yes, one of my pet peeves will always be when people post irrelevant, meaningless, or annoyingly negative comments just because it strikes them. The things people said when I announced I was starting Zoloft last year were unbelievable. There is email and messaging for that, oy.

My visit with my primary physician went extremely well. Their office has been working with medical students, and so I first saw a young man named Greg, who was delighted and highly attentive, even as I apologized for dumping so much information on him about my disabilities and chronic pains. His sympathetic face was true and sweet and empathetic. I wanted to hug him and tell him I would be fine, really, I would get through it. When I said that chronic pain was my normal I thought he was going to offer me a hug. When he helped me down from the table at the end, he held my hand tight and supported my back carefully, for which I was grateful. He'll make a wonderful physician. Dr. Carolyn is extremely down to earth and straight-forward. She is not a strong advocate of supplements, but she supports the idea as long as other doctors, like my neurologist, say it's fine. She and Greg were extremely pleased that I was doing well enough on my strongest drugs, Soma and codeine, with no dependency nor hint of addiction, and they were very irritated that people online have been harrassing me over the drugs I take, like the Zoloft and the Klonopin. Dear self-righteous judgemental humans, brains work differently, and what is mine is not yours, thank fuck.

I need to make an appointment soon with my neurologist, Dr. Debbie, because I have been having so many breakthrough seizures related purely to emotional states along with physical and mental stress. Dr. Debbie will be unhappy and will probably increase the Trileptal. I'd rather stay on it than switch and she agrees; we shall see. Seizures do happen when one has epilepsy and is under stress, despite Dr. Debbie's wish for them not to at all. But that is for another day.

Monday night, my left hand got paralyzed for a bit. There was plenty of feeling but no motion. My brain probably blew a fuse and flickered. Cerebral palsy is a pain in the everything. Also epilepsy. Simple partial seizures and all. Things are getting a little better, plus microspasms and agony. I am fine, just aggravated. Feh, bodies. But I laughed. You should've seen me arguing with my hand. I smacked it, scolded it, cajoled it, etc. The connection between neuro and muscular was lost, so I literally had to tell my brain to tell my limb to do things. What else could I do but laugh at myself.

I have my tea. I have my Lindt Chocolate Bunnies, both dark and milk. I am happy. Adam is working steadily. The cats are healthy and precious. Things are moving along.

Soon I need to hit up Barnes & Noble for a copy of Seanan McGuire's Discount Armageddon, the first in her newest series, which was released this week. I must not forget. I have been waiting for ages. I have been twitching, honestly.

I want to say that I feel fine. So I will. But we know that's not true. "Fine" is just a mask and a cover story. But OMG I Have Tea, and I am relaxing.

Seriously, neurons? Seriously?
Oy.
Sorry. Complex partial seizure out of nowhere. I was fine, really, I swear. The trigger was probably overexcitement. I did many things today. I'll shake it off. The postictal effects appear to be mildly hypomanic. Documented and noted.

Adam dropped me off at the Fallsgrove Shopping Center before going to work (he'll be in New York City again, back on Friday). I puttered around before crossing the street to the hospital and the medical center right next door. This is why the hospital is across the street from the Krispy Kreme bakery.

The doctor and the med student who performed my physical exam pronounced me fine and healthy, and we chatted as we always do, which I love about Dr. Carolyn. She likes to take time and talk with me about things. Like how the Zoloft is helping to calm my nervous stomach problems. She asked how the SSDI claim was going and said she was prepared to hand them all my records and even testify.

At the King Farm Shopping Center, I took my huge Aveda coupon and bought the Pigment Lipstick in Maracuja and the Uruku Gloss in Berry and an Eyeshadow in Aura. The colors, the colors.

There are times when I want to quit any and all internet forums and communities. But they really are so helpful. I've learned that I can ignore the stupid people who insist on being Armchair Doctors and Armchair Therapists. But it doesn't make it less annoying. I've learned to block strangers on Facebook who send me messages about my status posts, claiming they can cure me, or solve my medical problems. Oh, I bite my thumb at them. I shouldn't bait them on Facebook. But sometimes I like being the bitch. I get cranky after a while. Don't we all.