nikL's Journal

i'm happy that finally, after months of trying different herbs, i've found ones that help to significantly reduce anxiety, seizure, viral infection, depression, menopause/pms and inflammation, with minimal negative effects for my body. some of these plants are known to reduce pain and/or spasticity as well. it's only been recently that i've been able to use these herbs, with some money and the months of gathered knowledge put together. now i've started taking them on a regular basis for the past 7-10 days to get a good idea of the synergistic flow of them working on my body together. i didn't want to record this in my journal until i was rather sure of the effects of this recent combo. other times in the past, i wasn't so successful, but in turn found other, safer alternatives.

sometimes, if i get more than mildly depressed, or even if i'm feeling well, i decide *not* to take these herbs, missing doses.perhaps i don't want to be reminded of my current state. on the other hand, taking them could be inconvenient or i'm trying to save money, etc. what this does is actually set me back physically and mentally while allowing the herbs to lose their effectiveness, so that i've to start all over again and wait for those to get to a certain level in my system. this actually causes me to lose money, time and quality of life. 

if i can stick to this regimen carefully while noting the herbs' beneficial qualities, now i can reduce/stop some meds slowly over time (specifically anti-anxiety med over these past 2 weeks, and an anti-seizure med several  weeks before). at some point, i hope to do the same with a long acting inhaler that leaves me at risk for long term health issues. i understand this is risky, but i'm working with my doc and herbalist on this.

this doesn't mean i'll never have bad days physically or emotionally, but that i can attempt to lessen the risk of short and long term side effects of common meds. 

so, now my pharma med list includes:

oxybutyin 5mg @ pm

oxycontin (10mg) @ am & late eve

norflex (100mg) @ am & pm

colase (1 tab in pm)

emergency inhaler (albuterol)

symbicort (one puff in am)

valium (emergency only, i.e. panick attack/chem or ptsd-induced seizure)

that sounds like a lot, but it's less than what i started with earlier this spring. slowly but surely. !yay!

what i'm taking for herbs, my combo was after much personal trial and error over this past year. everyone's body chemistry/history is different. soooo, with that in mind, while being vigilant for side effects with above meds, here's the list:

xiao yao wan 6-8 pills am & pm for menopause/pms/seizure

albizzia 9 for depression/anxiety/seizure 3 pills 2x day

gotu kola for seizure/anxiety 2-3 droppers over a day's time, in 1/2 glass (4-6 oz of water)

skullcap for insomnia/anxiety 1.5-2 droppers before bed in 1/2 glass (4-6oz h20)

elderberry for cold/flu prevention 1-2x day

bromelain for anti-inflammatory/blood mover 500mg split am/pm, eaten with food

in the past, i found out that i needed to take a break from some herbs to keep their effectiveness going. blood pressure may be raised with the elderberry and gotu kola (the latter also can raise blood sugar), so with these herbs breaks can be good to reduce those side effects as well.

 plus i make sure to get the necessary water intake for the day, fiber with a multi-v and *non* diuretic tea (like rooibos, my fave, that also has anti-viral  properties...not chai, twig or decaf green, mint or other herbs that had me go more frequently or irritate the tract). flavoring the water with lemon sometimes is nice for variety. i cut out some spices (and, unfortunately, cranberry extract) to reduce frequent urination, and now take less irritating form of vit c as well. cutting out sugars (including reducing fruits and fruit drinks) and refined carbs (inlcuding replacing white with brown or red rice) has helped me to keep some weight off too while balancing blood sugar, when i can't be as active as i'd like.

my exericse regimen is still to be desired, after a few crash and burn cycles of even gentle yoga. qi gong and gentle stretching is the mainstay for now, with a little elliptical (like 10 mins) if i can't go for a walk.

sooo... that's about 9-10 months of research and experimentation to find out what works for me. finally i feel comfortable with a regimen that has the least amount of side effects from either long or short term use. i hope it gets better from here!

i'm also happy to find a therapist that i think i can work with for the long term, and housing i can live with improved air quality over the winter months (when the carpets get removed and the sealerr prevents offgassing from chems in the closets... hopefully finished by oct 15th).

i went to my allergist and he was very helpful, willing to do more to test my immune system with blood work. this is hopeful. s helped me to fill out the paperwork, as it was a lot and repetitive. maybe we'll get closer to what is going on, and glad not to have to go thru another referral. the downside was that the place was very smelly (thanks to one staff who broke the no perfume rule, plus being ushered into a testing room that reeked of alcohol and something else, but at least was on the first floor), and toward the end of the visit i started to have difficulty comprehending stuff, then getting tired.

then my gf and i went to the grocery store. i picked up some cookies (no gluten, soy, dairy or nut... they were alright) and she got some day old banannas. then we went for chinese but even though the meal was good i couldn't eat much of it. i even smoked a digestive puff beforehand. i was having a hard time swallowing the different textures and felt rushed. the music was overstimulating me suddenly, part of the chem exposure thing. we got back and she took me to the bank and waiting in line was a real chore, with me feeling weak.

well, i've a delishious meal later. now i'm drinking some vitamins with rooibos tea. time for a nap since i didn't sleep very well last night. maybe i'll be hungy later. it;s a beautiful day and i wish i'd the energy to enjoy it. if i don't sleep too late maybe i can still get out there.

yay! i'm glad congress didn't bail out those banks. i hope they don't change thier minds, unless they want to keep their jobs, they better not get bullied by the fed or nyse goons.

we got the runaround today regarding my old obgyn records. i didn't get what i requested at all. we traveled for about 1.3 hrs one way to come up with nothing from that office, after i was going there for a number of years. ..the old primary office frontdesk staff lies thru their teeth just so they don't have to do anything. last summer i spent so much time getting the runaround from them, it was very frustrating. glad to have abetter provider now.

my only hope is that i've enough records together to get a hysto. now i've to ask another local obgyn office for their records tomorrow. all to prep for thursday seeing the new obgyn who wants to help but is concerned that we get all the info.this is crucial cuz i can;t be on such a high hrt dose to stop my period, it's not good for my blood. lowering the dose with a complete hysto is the safer way to treat my body. but the longer i'm on high hrt the more risk for stroke or organ failure. i hope that my new obgyn can help make something happen within the insurance guidelines.

now with the hippa law it's nearly impossible or at least very difficult to get your own records. time consuming to go to every office and in some cases pay if you want your own copies. really it's to protect doctors more than patients, like they say.

anyway, we picked up some herbs and got some supplements. got a good liquid multi vitamin which i desperately needed for a while now since i'm not eating right much recently. plus elderberry and lyseine which is supposed to help kill viruses. and gotu kola and skullcap as i'm trying to cut down on valium.

back on the oxybutin now that i'm taking colase (stool softener). so now i should be able to poo and pee at will, ahem. we'll see.

realized that i can;t; take acetominophen because it makes my blood coagulate. this week i'll be talking to the nurse who will ask me questions before surgery. i couldn't drop off at the ent office the info i copied from online by doctors who treat cfids/fm/mcs patients in the operating room, but insted talk in the pre-op interview and maybe get the name of the anaesthesiologist to send the pages.

i'm pissed that i can't stand for long. it's like playing russian roulette on my feet. the splints worked okay at first then they hurt more. i don'[t know what the time period is for the splints to start improving my condition longterm. after leaving them during a failed trail period, i'll try to wear them for 2 weeks or so, and see if that really improves my feet. now i can't do more than a few dishes or forget standing for long periods to cook. it's quite a nightmare.

found a UCP resource that is actually helpful, trying to find caregiver support and advocacy services.  and the local ad lib is going to email events during the winter for peer support, potluck and art activities.plus, my gf found out that mondays from 6-8p they teach knitting at the library. i missed it today with all the errands but next monday for sure i hope to go and make my gf a nice scarf.