brightlotusmoon: (Asha)
My general physician refuses to referr me for hyperbaric oxygen for what I agree is totally valid reasons, unless my neurologist and pain specialist both think it's okay. I just finished a scholarly article saying that there were no conclusive findings or great evidence that it did anything for brain damage. But we'll see what the other doctors think.


Oxygen Therapy or Hot Air? Bioethicists Say Treatment Doesn't Pass the Test - NBC News.com http://www.nbcnews.com/health/health-news/oxygen-therapy-or-hot-air-bioethicists-say-treatment-doesnt-pass-n262791
brightlotusmoon: (Snow White Blood Red Dragon Witch)
I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

Lately, I've been getting genuinely angry at many Facebook friends and acquaintances - and it takes a fucking lot to make me genuinely angry. Multiple people on my Feed have been reading and watching the internet and talk show versions of medical conspiracy theories and tabloids - technincally slightly true, definitely not completely true. "So, these doctors on this daytime talk show or YouTube segment or extremely biased blog are saying that almost every serious health problem in America can be linked to pharmaceutical drugs or the side effects from those drugs. So, have fun taking those deadly dangerous pills! I'm going to be all smug and condescending because I don't take any pills at all even though I probably should for medical conditions I refuse to talk about."

Have you ever had a triggering of your rage gag reflex? Not quite retching, but a mental version of "I am about to explode rage all over this!" because something has truly, severely pissed you off. That has been me over the last couple of days. Some very very intelligent friends have been reposting these ridiculous claims, and my response is usually double facepalm and "For fuck's sake, take everything you read and hear on these blogs and talk shows with grains of salt, please, please, please." Like... okay, I like watching the Doctor Oz show every now and then. Quite often, he is extremely insightful, helpful, and correct. But he is also trying to get high ratings. Same for that talk show The Doctors. Who also used to be Oprah's friends. A panel of four core doctors from different specialties talking about medical breakthroughs, things that are good and bad for you, et cetera. Apparently, a recent episode featured the ER physician claiming that pharmaceutical drug side effects were causing most of the country's medical problems. At which point I facepalmed, went online to trusted websites, and proved him essentially wrong with a few keystrokes. It turns out that after the episode aired, multiple physicians and specialists who were not mere ER doctors called bullshit and blasted the episode and the hosts for being irresponsible. Again, ratings ratings ratings. But so many Facebook friends are falling for it that I wound up "hiding" their posts because I was getting seriously insulted. Funny that this happened after I made a status post about how grateful I was for the pharmaceutical drugs I've been taking to help mitigate my conditions.

Look, pharmaceutical drugs are not the Best Things Ever. They have serious side effects for many people. They alter the body and brain in ways that can be more damaging than the conditions they are treating. BUT. For millions of people, they are lifesaving. They have treated the symptoms of thousands of crippling diseases successfully. For many patients, they are the only options, because holistic medicines, supplements, and alternative therapies haven't worked for those patients (and of course, holistic medicine is either The Best Only Medicine Ever or Quackery Placebo Bullshit). So, to say something like "I heard from a TV doctor that pharmaceutical drugs are the main cause of most medical problems" and to follow it up with a slap in the face like "Good luck taking your pills, guys!" is... a slap in the face. Especially if that doctor was being paid to exaggerate findings or to promote some sort of media, to gain readers or viewers. And especially if the people repeating these claims hadn't seen a doctor themselves in years due to lack of opportunity, fear, hatred, or simple mistrust of doctors - which makes me laugh my ass off. "I don't trust doctors, doctors have never made me feel better, but this one doctor said this thing and I believe it completely and so should you!" It is one thing to drink the Kool-Aid. It is another thing to splash the plastic cup of Kool-Aid in my face.

You know, this is why doctors practice medicine. Practice, not master. It is a practice. Many many times, they get things wrong. Doctors are not perfect. Nobody is perfect. Not even you. So, dear Facebook people, please double check your facts, get second opinions, and actually think about it before you quote what sounds like medical conspiracy theories.

In the meantime, I'm going to sit back, smile, watch silly cat videos, and take my evil pharmaceuticals and my quack herbal supplements that are all maliciously working wonderfully to effectively relieve the worst symptoms of my twenty separate medical conditions. Damn them! *nods*

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.
brightlotusmoon: (Peaceful Dragon Model 2)
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.
brightlotusmoon: (Default)
I have learned this: I am good at pretending to be "normal" while my inner self cries out in fear and terror and anxiety and self-loathing, curling up against the rockiness of my scarred brain, shivering with open wounds from various hard scoldings that take the psychic form of beatings. I admit, I am a child in so many ways. I still do not know how to handle a hard cold world.
I am in support groups, and various therapies, and I am seeing various doctors, and I am taking various medicines that are working... and yet people still scream and scold me about mental illness symptoms that I really am still struggling to keep under control. I keep saying "This won't go away overnight. I'm not going to get better in just a few months. This might take years."
I am finally happy to know that people accept this. But I am now afraid to answer emails and phone calls from those who would only want to scold me. And if I do answer, my brain shuts down its emotional bits, turning numb and detached and analytic. That is not a way to live.
I am a warrior. I am a dragon. This is my fight. I will battle the parts of me that insist on carrying out symptoms of mental illness, but the only people who can help me are me myself, my doctors, my specialists, and my therapists. The only people who I want to support me are my closest treasured loved ones who actually understand what it all means to be swept away and nearly drowned by mental disorders that keep trying to destroy us...

Postscript: I suppose this would fall under that category of "stop medicalizing yourself, you hypochondriac cripple, grow a backbone and get better already." Sometimes I repeat that to myself; oddly enough, it is like a calming mantra.
brightlotusmoon: (Pixie Model 2)
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.
 
brightlotusmoon: (Pixie Model 2)
My initial physical therapy visit was so wonderful, they've set me up for more therapy two times a week for the rest of the month. Physical stretches and exercises with Dolores and Carolyn, biofeedback and meditation with Mercedes, and so on.

Dolores was happy that I knew everything about all my issues, and I even showed her my phone note with every single condition. She started me off with some basic light core and leg movements, then a heating pad against my lumber area.
I spent about two hours with her. She was unbelievably knowledgeable about fibromyalgia and cerebral palsy; she was so compassionate and understanding that I wondered what planet I was on.
I'm used to "regular people" mocking the syndrome nastily, calling sufferers "fakers" and "liars" and "drama queens" and "desperate for attention" and "pill seekers" and "exaggerating everything." Even many doctors and medical staff mock us. But the medical staff and doctors I have seen have all been... incredible. Astounding. Extraordinary. Maybe karma is finally giving me something back?

When I spoke to my mother later, she of course wanted to know when I would get new orthotics, when the tharapy would start working, etcetera. I called her a bulldog and said I'd smack her on the nose; she said she'd bite my leg. We have that sort of joke a lot.

My twice weekly sessions start next Monday. They printed out the entire October schedule. This is going to be amazing. I think I have finally found the best therapist.

On the flipside, I am completely exhausted right now. Things hurt, so I took pills. But for that hour after I left the NHR building, I felt energized, refreshed, stretched, in less pain.
The bus stop in front of the building was for a Ride On bus that ended at Montgomery Mall in Bethesda. I thought sure, what the hell, and walked around the mall for two straight hours. Spent some time in Sephora with coupons, got some free stuff from the Body Shop. But it was the walking that was needed. At the end, when the bus went to Rockville and I transferred to Shady Grove and took the Lakeforest bus and was dropped off in front of my neighborhood, I was so drained that I didn't want to talk, I barely wanted to move. Adam was home at that point, so I spent a few moments welcoming him home. Then I crawled upstairs, put my stuff away, and fell onto the couch.

So. We shall optimistically anticipate next week's therapy sessions, especially the biofeedback.
brightlotusmoon: (Pixie Model 2)
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.
brightlotusmoon: (Default)
Well, what do you know. The pain specialist nurse informed me that my stabby electric knee pain is totally a symptom of fibromyalgia. And it took me saying "Wait, really? Seriously? Are you sure?" before she started laughing. Also, my stabby electric wrist pains are a symptom of ulnar entrapment, and the doctors are going to give me a nerve test and then suggest specific exercises and braces for my elbow. Also, the nurse wants me to go to a physical therapy place that focuses on fibromyalgia. That thrills me. It's like, "YES! People really get it!"

So now I can add the thing that has annoyed me forever: When someone honks and cat-calls at me while they are barreling down the road especially in the opposite direction, what the fuck are they trying to do? I'm not going to respond. They'
re not going to slow down or stop (please gods no). What. Is. The. Fucking. Point? WHY?
It's funny. I HAVE been asked out by men and women in vehicles parked or slowed while I was walking, and they were always pleasant when I said I was married. Literally, "Hey! Do you have a boyfriend or girlfriend? or Are you married? Yes? Aw, I got here too late. Well, you have a good day!" And they would smile kindly and move on. I mean, yes, it is still weird, but it's not harassment. If I'd said I was unattached, they would have asked me out, and we might have chatted for a bit. But they were at least polite. People who yell out wildly are so fucking creepy it gives me chills.
http://brutereason.net/2012/10/14/on-men-who-think-street-harassment-would-be-awesome/

The thing that really really made my day like forever: A pain specialist nurse saying that fibromyalgia really can produce crazy evil symptoms just by being fibromyalgia, and that nurse recommending a very specific fibromyalgia physical therapist. I mean, truly, that made me so fucking happy I could cry. If only every fibromyalgia patient could have it like this.
Spears raised.

Sally Hansen Nailgrowth Miracle Nail Polish in Forbidden Fudge.
You guys, my nails look like gold infused dark chocolate. I don't know if this will increase or decrease my chocolate cravings. Probably just make me smile while eating chocolate.
http://3.bp.blogspot.com/_fX--nOoiv6w/TRDk1MZtDnI/AAAAAAAABqc/4q5SfcGPK8o/s1600/Picture+023.jpg
http://4.bp.blogspot.com/_fX--nOoiv6w/TRDk2sGx_fI/AAAAAAAABqk/gc0SxessJ7s/s1600/Picture+026.jpg
Also, the Nailgrowth Miracle Polish in Divine Wine is still my favorite, but Forbidden Fudge is close. Divine Wine is bloody wine red with gold shimmer like my lipsticks, Forbidden Fudge is dark chocolate brown with gold shimmer like my hair color. Awesome.

So, I've discovered that I prefer wood bristle hairbrushes and boar bristle mixed with plastic or wood bristles, and metal bristle brushes. They all work so much better than regular plastic brushes. Ionic, cermaic, and tourmaline infusions are also awesome. The brand Goody has a couple of gorgeous plastic boar mix bristle ionic and ceramic brushes that are fairly cheap. When I can, I go to Ulta or Whole Foods and go for Olivia Garden brushes and Bass Brushes. And a dear friend mailed me some small Widu wood brushes that are stupidly expensive but seriously amazing.

Dear "Endlessly" by Kiersten White: I know I've been promising to read you since the end of July when you were released, but I got so distracted by other books; I am so sorry. People kept shoving books at me, and I kept finding new shiny books, and and... I know those are bad excuses, but I promise that this time I will read you, because I love you, and I have loved you since "Paranormalcy" and because I have so many other books to read but I swore I would finish you first.
Dear Self and Friends: No more book recommendations, no more new to me books, no more shiny books to adore until I am finished with the one book I promised to finish three months ago.
I'm glad that's out in the open now.

Seriously, though, honestly, I am so fucking thrilled about my discussion with Nurse Mary. She is so very knowledgable and helpful about fibromyalgia, cerebral palsy, and nerve pains. She smiles all the time. She really really wants to help me. She hugs me. She wants to see me every month, and also because she likes me. I like you too, Nurse Mary.
brightlotusmoon: (Default)
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.
brightlotusmoon: (Default)
Yup, the Baclofen is still working, and I am still in shock about it. I am really really not used to my left side feeling this loose and calm. Not even any tiny spasms in my fingers. Plus, I can drum my fingers on a table with each finger individually and with almost no pain (!!!) - that was always my main indicator. See, it's fairly simple to drum your fingers, right? Not my left hand, since all the fingers would hit the table at once. I could never get them to hit one by one. But now I can, even if it is very very slow. And you know how most people can touch each finger to their thumb fairly quickly? I couldn't. Now I can. So, erm, wow?

This is insane. I feel as though this is wrong somehow. This isn't me, this isn't what I'm used to. I know I will wake up tomorrow and things will be normal again, and then I will take the Baclofen in the evening and everything will be weird and insane again, and the cycle will continue. I have no idea when this "temporary new normal" will stop freaking me out.

Also, next month when I see the pain specialist again, I need to discuss this ridiculous pain in my left wrist. It is sharp, stabby, hot, explodey, electric, and localized. I'm guessing repetitive stress pain, but I'm not a doctor. We'll see. I still need to go get X-rays on my knees.

This is so weird, having such a newly active medical team working with me. Awesome, but weird.
brightlotusmoon: (Pixie Model 1)
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?
brightlotusmoon: (Default)
Let's see... The neurologist (Dr. Debbie) increased my Klonopin from 0.5 mg daily to 1 mg daily to back up the Trileptal. Those pills are green. Neat.
Also, it is amazingly easy to walk from the Neurology Center to the Walgreens and the nearby bus stop. I canceled the Metro Access return trip, because yay. I love Walgreens. Now I can just schedule a one way Metro Access trip to the Neurology Center, and take the bus to Rockville, then get to Shady Grove, then take the 57 bus home. This works quite well.

Also, OMG HOLY CATS YES.
http://drinkbodyarmor.com/flavors.php
I've tasted the labels colored blue, purple, orange, and dark yellow. Purple is currently my favorite. You would think blue, but acai is more ubiquitous these days than goji. And I cannot wait for the one with the green label to come to local stores. That will tie for favorite and I haven't even tried it. Screw you, Vitamin Water and similar beverages. Body Armor drinks are now my most wonderful convenient vitamin electrolyte coconut juice beverages. They all have yerba mate extract, too. Energy! Science! Flavor! Antioxidants! Score!
brightlotusmoon: (Default)
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.
brightlotusmoon: (Default)
Oh my gods, you guys, that pain physician was awesome. He was so compassionate, kind, understanding, empathetic, and sweet. He was actually surprised that the amount of pills I was taking was far less than the doses of most of his patients. (Fuck you, naysayers.) He said that the small doses I take probably wasn't enough to really manage my chronic pain.
He gladly increased the amount of pills in each bottle, and put me on a rigorous monthly schedule: I will have enough pills to last a month, and then I must go to his office and see a nurse specialist, who will check my progress and send refills to my pharmacy.
As for my overall pain management protocol, he plans on discussing tons of options with me: Injections, pharmaceutical grade supplements, supplements I already take, therapeutic exercises, holistic therapy of all kinds. He wants to eventually do an MRI on my knees and my back. He explained that his approach is aggressive but gentle and to him, the patient always comes first. He wants me to be totally comfortable and safe in any environment he will put me in. He has been doing this for over thirty years - you can find chronic pain managment video interviews with him if you Google Dr. Glenn Babus. Apparently he's a fairly well-known pain specialist in this area and in the New York area. I feel lucky!
My appointment in September will be with Mary, who, according to the wonderful orderly I saw first, is really friendly. Really, every single person in the Spine Center is very friendly. While the orderly was checking my blood pressure and asking questions, we had a good laugh about so many things, and she told me that she already liked me. I really feel safe and well-treated.
So, if anyone wants to try a pain specialist in the Rockville area near White Flint metro, please check them out. I don't think I have ever felt so satisfied with a doctor on the first visit.
brightlotusmoon: (Default)
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.
brightlotusmoon: (Default)
My physician called me to go over the list of questions that the disability lawyer sent her, and we answered them together, and yeah, it's bad. I don't know what else the SSDI people will want, but I think between all this documentation, I'll appear intensely miserable, mostly incompetent, and screwed up on a daily basis, which is just the truth. I mean, sometimes walking five minutes to and from the mailbox or bus stop leaves me dizzy and achy on most days, and that is sad.

She wrote so many "[patient can barely do this]" and "[patient cannot do that at all]" and "[patient can only do that for so long]" and "[patient needs an unnatural amount of rest]" answers that it seemed like every single answer translated to "Patient is a debilitated mess." Even the questions about emotional and mental competence were negative. My memory blanks out too much, I often stammer and slur while speaking, I lose words too often, and I am in tears almost all the time wishing it wasn't my life.

(It's the losing words that hurts the most; I find myself resorting to Buffyspeak via TV Tropes too often. It's getting to the point where I almost hyperventilate when I forget the proper words, especially because I've always been a natural writer. While we were speaking, I found myself pausing, stumbling over my tongue, physically struggling for words that were so easy.
And people look at me and see nothing wrong, just a tired pale girl who limps and twitches a lot and looks like she hurts but probably doesn't because she seems fine even when she has a cane. But my doctor knows to look deeper; every time we see each other her eyes immediately fill with sympathy.)

My doctor called me "Sweetheart" and "Dear" and wished me a good weekend despite the migraine, and she told me that I was one of her dearest patients and she really wished she could do everything to help me; and her compassion and made me choke up a little. Having your primary care doctor love you and want to help you as much as possible... I feel like it is so rare.

It is actually one hundred degrees outside. That is not helping me. It's not helping anybody anywhere, either.

OMG Tea!

Mar. 7th, 2012 09:18 pm
brightlotusmoon: (Default)
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.

Brains

Jun. 15th, 2011 06:21 pm
brightlotusmoon: (Default)
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.
brightlotusmoon: (Default)
So, the Zoloft.
I saw the neurologist, who was pleased with my seizure progress. She understands that stress and exhaustion and anxiety are my biggest triggers and that while the Trileptal may not completely stop the seizures, it definitely reduces them well enough.
She wrote me a prescription for Zoloft. 50 mg once a day. She said to start by taking less Savella over the next month, and then fill the Zoloft prescription. I'm anticipating it. I know there will be side effects but I am prepared. I am very pleased. My disability lawyer will also have more proof for my appeal case.
I see Dr. Jen, the therapist, next Monday, and I'll fill her in on everything. Mom is going to pay for my therapy sessions directly and will send me money every month to help with the cost of all my prescriptions. I feel good about everything. Although right now I feel tired and lethargic and meh. I feel nervous about money for the future, but I may have options this summer. We'll see.

Adam is leaving for Las Vegas tomorrow, to work on another job, probably on or near the Strip. He'll come home next Wednesday. That means that he'll be away on our wedding anniversary, which is Sunday the twenty-second. That's fine, though. He'll be in the city where we became engaged. And considering that our wedding was not entirely what we wanted, thanks to his mother's insane meddling, I consider the entire month of May to be our anniversary month. We can celebrate when he comes home on the twenty-fifth.

I've been collaborating with an Etsy shop owner who makes custom skin creams, lotions, and soaps. I told her I wanted a single skin cream with over two dozen specific ingredients, and she didn't even flinch. She is so excited. She loves making custom products with tons of ingredients, and she loves having a customer who is so extremely knowledgable about oils and extracts and holistic skin care. My special cream should be done by the end of this month or the beginning of next month. It will be phenomenal and epic.

I think my sessions with Dr. Jen may also help restart my creativity and inspirations for the main novel I'm writing.
brightlotusmoon: (Default)
I'll call her Dr. Jen.
She was sweet, soft-spoken, and deeply kind just in her body language, just by the energy she exuded. She radiated compassion and understanding, and I was so instantly put at ease that when I sank down onto the black leather couch and put the soft pillow behind me, I felt almost at home. Dr. Jen sat across from me, with a notepad, and smiled, and said, "Okay."
I said, "Okay," and smiled. "I don't... I don't even know where to start," I said. She said that was fine. I told her I might as well start from the beginning. I told her about my premature birth, my brain damage, the cerebral palsy, my childhood. Words tumbled out of my mouth. I told her about writing science fantasy, about writing superhuman characters, about the seizures and the sleep problems and the anxiety and the sadness. Every so often, she gently asked to interrupt so she could write things down. She said that normally she would just let the patient talk and talk, and then she would write, but she could tell I was a unique case already. I told her everything about the diagnoses, the pains, the frustrations. I'd begun crying the instant I started talking about being born.
I've heard that when many people begin therapy, they don't even know what to talk about. I not only talked, I told the therapist exactly what I wanted out of these sessions. That impressed her. Next week's session will be very interesting.

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