katie started school

freaking broke my heart. . . .. not a whole lot to post about. . . .the pills have exceeded my best hopes and I realize every time I tell someone how or what I'm doing to feel better I realize i run the risk of being instantly ostracized. I feel a little self conscious that I'm doing something so controversial, so widely looked down upon as a illegal substance. The pain being gone though is a major motivator to tell any of the nay sayers to kiss my booty, I feel great I haven't napped since I started this I haven't smoked  I'm so much more relaxed and I'm not going to give it up. Perhaps others should try to understand that the pain makes you pretty desperate hell desperate enough to knowingly inject yourself with something that causes cancer and makes you throw up for a whole day. . . .desperate wasn't the word. . . . .hell suicidal wasn't even the word.

I'm living and loving it. I drink ginger root tea at least two glasses a day and I take a fresh garlic clove and cut it in three and swallow it and two pills about four times a day :) my joints are all cracking around n if I twist my back sounds like rice crispie's,  I can bend down n touch my feet. . .. .. i can put my own pants on without doing a balancing act . The pain affects so much more of your life than you even realize, makes you angry makes life almost not worth living. I'm so glad i started this. . ... .

garlic,ginger root,green tea

adding at least a glass of ginger green tea a day and a teaspoon of garlic all natural anti inflammatories but so far not enough to last all night. I woke up miserable again and didn't take a shower cause the hubby woke up in a mood n he was in it so i laid on my heating pad for a few. I took three pills when i first got up due to literally everything hurting around into my ribs n three i kinda felt a little fuzzy completely functional fuzzy, took the kids to get the rest of their school supplies and school shoes and got my Sunday coupons without anyone noticing even my hubby so it wasn't a bad thing. I do notice I have more patience and I am not near as stressed as I usually am on any given day I used to yell n get easily frustrated when the kids took to long doing this or that n now I just sorta go with the flow more like the old me than I've seen in years. my husband and I used to walk for hours with no where to go just enjoying ourselves and each other and I forgot how that felt. How to just enjoy someone or something without any purpose just to enjoy it.

I'm still hurting randomly throughout the day and stil gotta figure out how to make it last all night but like i said I figure it has to build in my system just like all other drugs. The massive difference in all of this is I am catches glimpses of pain free or the old me of laughing of enjoying life. I'm living again and it is amazing I'm loving it I live more in one day even being sick n withdrawing than I did in a week before I started taking these. I have went to three stores today, made lunch rode my bike mowed and raked the yard and I'm not even done yet bath time and learning time are still to come. .. Jeania. . .finding it a little easier to stand tall. still withdrawing still got a head cold and stil waay happier than I have been in a rly long time

I caved

I'm ashamed to admit i took 10 mg of prednisone today, I woke up in so much pain I wanted to scream, not a normal you have a disease pain a your body is sick n everything hurts and i felt like I had a fever sick. This is so much worse than anything I have ever experienced. Today was my baby girls fifth birthday and it was nice to be able to move around a little. Funny the draw of the prednisone is so much worse than pain pills.

I'm a litle dissapointed that I gave in but at the same time I have began to wonder if it's not west nile or maybe one of the cancers these TNF's can cause so with the mild relief I have managed to feel today at least lets me know its not. today was mostly a good day, I ran myself ragged getting everything ready shewie birthday parties are exhausting. I haven't been riding my bike since I started to withdraw it just hurts so bad I barely wanna get up to go pee in the mornings weird how it hurts so much and I know laying still hurts worse but pushing myself to move through the pain is a bit difficult as well. doseage today is about six pills that were soaked for four hours

not the flu

so after spending all day yesterday with my entire body just kind of achy I decided to search for withdrawal symptoms of prednisone. Well guess what? I don't have the flu I'm withdrawing from steroids and my adrenal gland has went wonky. I was down to 15 mg a day so I didn't really think it was that big of a deal. a little research provided me with information that it will take weeks for the withdrawals to stop. yea me!! let me tell ya so far it sux I seriously thought it was a horrible case of the flu was even considering going back to the doctor for antibiotics. It's a litle hard to tell if my "meds" are working or not but i know i woke up this morning with my joints hurting and my muscle's feeling like I worked out for hours and hours last night. two of my little pills later I'm aware of the ache but my muscle's aren't hurting.

I feel like utter crap really, I wanna lay on the couch and do nothing or soak in a hot bathtub for the entire day. Tomorrow is my daughter's fifth birthday . .. . .. ...I'm considering taking a dose just to be able to be a happy productive part of tomorrow. I cannot wait for my body to be cleansed of all this crap I've been putting in it. My hair seems to be gradually stopping falling out I get about 15 strands now when I run my fingers through it as opposed to the 30 to 50 that was coming out in gobs repeatedly every day. I'm really glad about that call me vain but the thought of losing all my hair was what really started me hunting on the web for information. I've already gained weight that I don't wanna have, live with a horrid disease that makes me afraid to run or step of a curb to quickly.

I got this . . . .. .I feel like utter crap and I still feel more focused and more confident than I did a week ago. I'm stretching too and I think thats a massive indicator that my "meds" are working I couldn't put my hands above my head at the last Rhuemy apt. first time I caught myself in a stretch again I had that feeling that I hadn't done this is a long time. . .. . it feels awesome :)

flu and canna caps

okay so making my own weed pills is not that hard thankfully I was worried about getting discouraged if it was hard or messy but basically just a coffee grinder bacon grease (they say use canola oil or coconut oil) from what I understand more fat+heat=your pills. I'm figuring it's gonna take me a week or so to figure out dosing schedule and how that's supposed to go. I need to get some ink so I can re print my application for here, you know in Oregon pretty much all I have to do is show medical necessity have my doctor fill out a form saying what I have and if he thinks I will benefit. then I mail that and a  registration form and two hundred dollars and that's it. Pretty simple process I still gotta get my license renewed stupid thing expired on my birthday. I'm not sure what all I'm gonna learn in this but I've still been scouring the web for information on the benefits, I can tell you there is a plethora of all the good things about weed. . . . . .before all of this I would have scoffed and found many many reason to say NO to drugs. Sad thing is all those reasons I had circle in my head and I know that for the rest of my life those reasons will be thrown at me. . . .. .. ...never did I think  the day would come when me of all people would be illegally doing drugs simply for the medicinal purpose.

I was a rough n ready teenager I've done a few drugs recreational y. . .achmmm all when I was waaay younger and I have not touched anything but an occasional toke and lots and lots of beer since my children were born. I walk a straight line with them in my mind all the time never in my wildest  dreams did I think I would ever be in this place, and in my opinion with no choice, and the further I delve into the research and all the potential that this has medically I'm so disgusted that it is even considered still illegal, I'm angry that a synthetic TNF inhibitor that can cause cancer is shoved down my throat before a natural TNF inhibitor is even suggested or even better did you know that THC and CBD have been found to be cancer fighters? and the research is elsewhere because of legality issues. It just makes me sick. . . . .and I still have the flu so even more irritated. I can tell when the canna-caps are wearing off cause I get a body ache from the flu. . . . .. I'm ecstatic to report that my mobility has increased I'm still having random warnings in my hips but I figure I have to establish this in my system the same as if I would for the synthetic TNF's so I'm giving it a cpl months to fully be gone and I can in total honesty report that in the short time I've been trying this, my mood has totally elevated maybe because I don't spend my entire days trying to ignore some pain or another. I've walked more than I have in years and my hips should be out of place honestly with how many times I tripped and stepped down to hard I should have pulled my sciatica even on the prednisone. I am laughing and I mean really laughing not half laughing like I've been doing forever.

Only time will tell if this is all due to canna-caps or just in general a better feeling from being off the steroids etc. I was worried about being stoned all the time but if you are actually intending this to be medicinal there are many many was to "boil" off the thc so you only get the medicinal cbd and this is my goal I don't want my spiral into the dark world of drugs lol to be misconstrued into anything but what it is. I have had relief and this is so hard to express to someone who doesn't live with a chronic condition. My body is a cage a dark and painful place that has kept my very soul hostage for many many years, I've watched as this wretched angry hurting body has taken over my life and cried as the beautiful soul I had always believed myself to be just "died". I went from being thoughtful and outspoken witty and a hard worker, to angry, withdrawn, bitter, over critical, and flat out a bitch. Certain days I would hear myself and I'd inwardly cringe at how awful I was being. I have caught glimpses of my old self again and I'm hooked I want it. I'm still in here, once the pain dulled back I realized I'm still in here and I will be damned if I ever forget it again. This is my life and my body, obviously I know what works better than any doctor. For me there is no longer a choice, after the first day when I laughed with my family and walked everywhere, I knew there was no going back, I will fight for this to be my treatment.

After I get my card here if everything goes as planned we will be headed back to Ohio soon enough and then I will go right back to be illegal. . .... ..... I haven't smoked at all in two days mostly due to flu but maybe I'll quit for good or at least for a while, did I mention that pot wouldn't hurt a pregnancy? new studies even dispel the low birth weight that I used to hear. bleck sneezing again I'm headed to my recliner with my heating pad and a blanket. 

five days no more prescribed pills

no steroids, no shots, no injections. I have been feeling better but woke up with the flu this morning. figure it is my body really really confused I figured I'd go through withdrawals of some sort. I have smoked two cigarettes in two days, and trying to flush with fluids. I got empty pill capsules today to start making my own canna-caps. I have no idea if this is going to work out but I'm so hopeful so so extremely hopeful. Making my own canna-caps is a bit weird but it's going we shal see. I printed off my application and registration thingie I have to fill out and send in. I have an apt. with the Rhuematologist tomrrow and I dont think I'm going to go. I don't really see the point any more doctors and pills doctors and pills so far the relief I have felt in the few days of my experiment have been far more productive than months and years of pills and doctor's. I am laughing again. . . .I don't have any sensation of being stoned of high or anything like that, I notice a sense of inner calm that before was constant movement to take my mind off the burn. with no burn I have an odd where have I been feeling. almost like I'm seeing my husband for the first time in years, talking to him for the first time in years.

I'm still waking up with my ribs hurting, I'm still getting little warnings from my hips and when the steroids are completely out of my system I am worried about walking. I'm worried this may cause more damage than good but it is worth the risk to me. spending a few weeks recovering from my own experiment rather than the doctor risking my life with cancer seems somehow better. maybe its just stemming from my need to control my life and this disease has made me feel totally out of control and helpless. I worry about the social stigma of everyone when they all find out that I'm medicating with weed. I worry about a lot of useless things and honestly if this works for me and gives me back some semblance of my life then to hell with the nay sayers. My life, MY Body. . . . . no more drugs being shoved down my throat, or in my veins I'm done with it. I hope I have the strength to sticl to it, I hope that I dont get worse. . . .faith and hope. . ... . .and always standing tall

tastes kinda gross

four days ago I brewed my first illegal cup of weed tea. I'm not a smoker never have been really, I get stoned and eat the entire house then go to bed, however making it this way does not induce the "high" that most smokers are after. Let me be clear here it can. . . . . brewed strongly enough it can affect me the same way as smoking. I went on vacation with my family and pre brewed about a third of a gallon to take with me on our trip. I drank a coffee cup full the night before and slept oh so good, started the trip and drank probably about three to four ounces four hrs later when we arrived at the zoo.

 I walked for three hours with little to no pain, I didn't even realize how long I had been walking until we got back in the car and I looked at the clock. I was a part of everything I enjoyed my entire day and the day after that. We went to the aquarium and we went to walk the boardwalk in two days time I walked nine hours, more than I have moved in years!! the third day I woke up in A LOT of pain the hotel bed was almost like sleeping on the floor it was awful, I went to go n drink out of my jug only to find that it spoils. and the ride home was interesting the day before I was holding my husband's hand while he was driving and I had this odd sensation that I hadn't done this in a long time and I couldn't for the life of me figure out why. the next day as I'm completely stoved up on the long drive home it became clear why I stopped doing something so simple. the muscles in my body are linked to the inflammation that seems to have taken my body over most days and when riding in a car the sway and the bumps can cause my muscles to spasm quite painfully and it's become something I'm so used to I don't even pay attention to the fact I'm never comfortable riding in a car, the ride home I had to keep my arms and hands close to my center so that I kind of braced myself for the bumps and movements of the car to limit the impact and pain I felt. This was through a massive dose of prednisone twenty five mg a muscle relaxer and three tramadol pills and I was still stiff still in pain and still inflamed and every aware of every movement.

I got home and brewed my cup and as the burning sensation faded in my back I realized this is going to be my life long treatment. I sincerely hope that soon the medical benefits will push for it to be legalized I mean in comparison 4,000 alcohol induced deaths a yr and no recorded deaths due to excessive marijuana use? seems like a case of the pot calling the kettle blacker, splitting hairs and in comparison drinking is actually a lot worse. Still really really early into my experiment with this but so far the results more than speak for their selves. I will be legal soon enough I intend to make sure I am legal for as long as I'm here and can be the rough stuff will happen once I move back home it's not even on the docket there to even be thought of as legal. 

research proves useful

so after having spent the better part of the past two days scouring the internet for information leading to any kind of benefits of medical MJ I have come across some seriously beneficial information like the TNF's that they are pushing down my throat that also carry such scary side effects and risks, are also found in cannabis without any of the side effects. Now mind you I'm not one who likes to smoke pot I hate it actually and feel like I've wasted an entire day any time I have ever tried it, but from what I'm reading the parts that are actually beneficial are the leaves. Shake, (smoker's terminology) the stuff everyone else throws away is pulverized and put into pill form and does not affect the brain the way that smoking it does. Needless to say I'm super excited about this possibility. I read so many personal accounts of cancer and loved ones lost from these TNF's that honestly I was unsure about them in the first place but this kind of seals the deal I'm done with them. One they make me ferociously sick, two they shut off your immune system entirely (how can this ever be good in the long run?) three, if a herb that carries none of the risks can have some of the added benefit's why in the world would I want something manufactured?

I've always been a sickly one anyways and my daughter starts school next month so having my immune system totally compromised really doesn't seem like a very good idea any ways. Hey in my opinion anything is worth a shot and if after a while this doesn't work obviously I will move onto something else maybe even attempt to change the entire household's diet again. I am tired of being at the mercy of the doctor's I'm exhausted with all the pills that don't work, and I feel like I'm a file number not a person. . . there are many details of my life that are extremely important that I don't feel like they address. how about for starter's I'm only 28, how about the fact that it has progressed into my ribcage in a matter of two and a half to three years? I know I'm only walking due to the prednisone and I'm really scared to just take myself off of it but I'm done with them telling me how to deal with this obviously THEY aren't living with it. The last time I was in their office I asked what my other options were and the nurse literally told me "don't even go there in your head we aren't there yet" ummm excuse me? I've been "there" since this started don't presume you know anything about me or my life especially when the woman was holding someone else file. So this is my plan of attack and I am optimistic I'm going to attempt the legal route but to be honest I'm not really concerned with how legal it is I mean really? I'm going to after a normal pot smoker's trash all in the hopes of being able to live a normal life.

http://www.attorneyatlaw.com/2009/08/fda-orders-stronger-cancer-warnings-for-enbrel-humira-remicade/

the warnings of cancer from the FDA it began my search in the cancer survivor's archives where over and over men of age not just the children or adolescents they like to say it only affects and woman of age being treated with humira and remicade for various illnesses and at the two year markers somehow got cancer, it was heart breaking to read and I'd rather not risk it anymore. if you want to search yourself

http://csn.cancer.org/board_search/149?filter0=Hepatosplenic+T-cell

and then of course the things I've been reading about the benefits of MM

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC16904/

adding a few things to my diet

I have kids I have a husband and I have a disease and a house to clean etc. said husband if someone mention health food around him will turn green and run for the hills. He is not a healthy eater and will never be, I have come to accept this and just slowly add things I know are good for him into our dinner's like salad, he never ate them before now we have them several times a month. Not a huge improvement but hey I congratulate myself on that little dose of improvement. I'm going to be adding a few things to my own diet to see if there is any marked improvement in the inflammation and this comes after drinking two glasses of green ginger root tea, today has been an awful day I have decided to stop taking the pain meds and saving what few I have left so needless to say I'm stiff as a board and a complete grouch all day. I researched natural anti-inflammatory  herbs etc. green tea and ginger being on them I combined the two and yes there is improvement not like Eureka pain is gone but a marked difference in my trunk.

fifteen minutes ago I was prowling the kitchen and looking for something to snack on and upon finding nothing really appealing I was about to settle for the homemade apple pie I made today when it occurred to me that although I realistically will not change my diet again I had no real marked difference except hunger before on the no starch diet, maybe I can add a few things to help it along. So I made myself some eggs and combined it with about a clove of garlic which is also a natural anti-inflammatory. I think I might be onto something here, I think it's a bit unrealistic to set out to change your entire diet and force everyone around you to only eat crap, and rabbit food, why not just add a couple things that obviously you can't survive off of alone but can benefit your body? we shall see however I feel a bit of a spark at this theory, like if it works maybe I should write a book except I have tried that a couple times and always dull out somewhere in the middle. Short attention span I think. I can only hope someone out there will run across this blog and it will be of some help to someone else trapped in this hellish disease.

medicinal cannibis

I'm seriously considering asking for it and very soon, I've been on humira for a month and a half and no relief and I'm so sick of wasting my days, I sit here and make it through dinner and feel exhausted at two in the after noon. I'm impatient and I want to enjoy my life, after my husband goes to work I sit here like okay what can we do. . . .the park requires attention I just don't have to give. Meeting people right now when I'm to tired to even focus on a conversation? or better yet the amazing moods I get in when my ribs are so constricted taking a deep breathe makes me grunt like an old man? It's embarrassing and entrapping, I hate this disease oooooo not to mention the rage I sometimes feel, kinda at the world I mean wouldn't you? picture yourself wrapped tightly inside some sort of blanket that if you move the wrong way or attempt to take a deep breathe it has razors lining it and if you move just the right way you will hurt yourself to the point of bleeding now picture those razor blades have the ability to make whatever limb you cut yourself on completely and totally useless? I'm sick of the pills that don't work. I now take double the dosage on days I know I'm leaving the house the stupid things don't work at all my back is still a burning constricted mess that reaches around into my ribs, my entire upper trunk is a wasted useless thing I feel like I have to drag around. If it wasn't for the prednisone goodness knows I wouldn't be walking and then what? I'd be suicidal.

I'm also a drinker, blame genetics or whichever you choose but four out of seven days a week I unwind usually with a twelve pack to myself. Is this any healthier? lmao hell no and I realize my kidneys or my liver is probably seriously suffering but while drinking somehow the muscles n joints relax enough I resemble my old self, I feel more awake than normal, and yea I know it's all an illusion but trust me when I say the illusion is worth one of my kidneys. I'm so sick of having to tell my babies not to hug me to hard. so tired of telling them no mommy can't get down there n play with you. Damn it I'm so dissapointed the humira hasn't worked yet, I'm running out of options, the last humira shot had injection site reaction that still hasn't went away looks like an itchy spot of poison ivy.  I don't like to smoke pot, honestly I'v been an occasional smoker and I don't like the slowed down feeling I get, I don't enjoy the head high cause it's almost like some sort of blanket covers my mind along with my body. Fighting to stand up at the moment.

costochondritis again

swear these are the worst thing I have ever felt in my life, the pain alone is enough to make me almost lose my mind cause it shift from the middle of my chest to closing my throat to the bottom of my ribcage and no other way of putting it, it hurts so so so bad. They last for about twenty minutes completely incapacitating me I literally cannot move or it hurts worse I can't breathe at all and yesterday I just silently cried while it ran it's course. The last few minutes of it I almost lost my control on it there is no control you have except to keep your breathing as shallow as you can to lesen the pain a little but as it moved to the bottom of my rib cage I started crying with my husband just holding my hand and telling me to relax. I silently bawled I couldn't very well sob cause I couldn't get the air into my lungs to make any noise. The helplessness of the attacks is what makes it the worst. there is literally nothing I can do but lay there as it's victim. Afterwards and even as I type this I feel vulnerable and violated. I'm having little spasms this morning after sleeping for thirteen hours that is telling me it's going to happen again today and I'm scared. They hurt so bad for a few seconds I'm sure it's a heart attack and I'm scared it's the end that I'm at the very least rupturing something. I hate feeling scared I hate knowing it's coming and I cant stop it. I wouldn't wish this on my worst enemy. I can't do anything or plan anything until I know they are done, there is no warning just boom the most excruciating pain I've ever felt and suddenly I can breathe. and today I'm utterly exhausted I feel like I've been run over by a train everything aches everything feels swollen and not joined together right. we have plans today to go to the little fair in town and I'm terrified it's going to happen in front of people, for an outsider to see me at my most vulnerable would shame me to my core.

sleep sleep sleep

I pushed myself way to hard and I am aching from the base of my skull to my feet, all I wanna do is sleep but I cant lay down any longer cause my ribs are screaming when I'm laying down. I am glad to be home with it instead of around anyone though, my feelings are hurt and my body hurts really not a good combination, I tend to lash out when I'm just hurting alone so I think I may turn my phone off and hide out a cpl days to re coup. My husband had to help me put my pants on today, this is something he has become used to doing randomly but it hit me today how much of a sweet gesture it really is. I never ask for his help I can get one leg in just fine but when my hips r stiff I kinda have to lay the other side on the ground and hold onto something while I quickly jerk my other leg in before it hurts to much. he see's me start this routine n just comes and holds them open for me while I hold onto the counter, pulls my pants up and kisses me on the cheek n goes to make the kids breakfast. He puts up with everything this disease throws at me right along with me, told him I'm going to be laid up a couple days and he doesn't hesitate just says okay, kids want to go bike riding and I can't do it, my right leg is tight and really stiff getting up and down is hurting it, it isn't quite pulled cause it's not with every step but it's just enough to slow me down. . . . ....this is a cruel thing to take from me daddy is headed out the door to ride bikes while I sit on the porch on my heating pad n watch. I double up on the prednisone for a couple days and it should take care of it but till then I am out of commission and hiding out. It's not so bad I suppose makes me slow down and pay more attention to my kiddo's, read a book or color . . . ......or sleep. . .. .sleep sounds so good.

and to top my cake hair loss

second dose of humira today and dang those shots hurt, sends my heart rate up as soon as I grab the pen, the burning brought tears to my eyes today, took a shower and gobs of my hair is falling out, I just started to bawl, I've been riding a bike which is completely amazing and feels so good to not be afraid to push myself and to actually work up a sweat and not be afraid of walking the next day. I was so scared that first morning to put my feet on the floor, I was sure it was gonna hurt, and when it didn't I was almost euphoric scarfing breakfast to go again and have went every morning this week, I love it and am so grateful just to be able to do it, its almost as though I've regained some sort of freedom. The hair loss is I think due to the blood pressure pills, so I'm not sure if I should just stop taking them or not.

I've been redoing furniture in my house and have to say it's looking really good, back is really flaring right now the burning is almost impossible to totally ignore and by the middle of the day I'm tired as hell, even right now I wanna take a nap. I'm going to go on a short bike ride first though and even as I type that I realize how tired I actually am, its barely one and it feels midnight or later, I'm exhausted and have barely done a thing, some days its really hard not to feel sorry for myself and trapped in this horridly old body, now my hair falling out maybe I'll start to look as sick as I am and people will take it more seriously, found out some of my family thought it was cancer and although its not it can be just as serious and in my case has dramatically changed my life. It's just not something people hear about or has even really been studied at length so thinking about it for me the side effects of the drugs the shortened life span all the complications maybe if people thought about it as cancer they would understand more what I'm faced with. And although I totally agree I can choose to be positive about it on days when I wake up happy n perky n ready to go and then shower and catch a big handful of my own hair its extremely hard to keep smiling as reality just bitch slapped me that I can be as happy as I wanna be I'm still sick.

So what? so be it. . . .. .this is me and this is what my life now consists of ups and downs and side effects. . . .speaking of I am cutting this off stomach is doing flip flops and I know the puking is going to start soon, injection day sucks and I want to at least get in a small bike ride before I start hugging the porcelain throne.