sleep eludes me

I've had roughly five and a half hours of sleep and the shooting pains in my shoulder and chest have rudely awakened me and no matter how I've tried the couch the recliner my sons bed I cannot go back to sleep. Pretty sure my shoulder is hurting because of something in my neck I have the urge to look down at the floor this morning my neck is so tight. I'm headed for a hot shower soon I've got to finish up my christmas shopping today and while sitting here grouchy and aggravated I always think about how much time I have before everyone else wakes up. How much time to allow the pain to just show through and not fight it off. Not that this is any better than pushing it away, but it does take less energy. On days like today I mentally prepare myself to be ready to smile and deal with it, my kids and my husband do not deserve to have a constantly grouchy woman in their lives. I use these precious moments to be fully aware of the aches and pains and to evaluate if they are normal amounts or not, so far yea there is pressure and irritation building in my right eye again but vision isn't blurry so should be good. Deep brathing makes my arm hurt all the way to my wrist so I must have pinched that damn nerve in my neck while I was sleeping. . .hopefully the shower will allow me to un pinch whatever it is.

Had the nerve to attempt to look up the mortality rate again. . . the only literature that I can find is in medical terminology which if I had the time to look up every big word would be so much easier to understand. I don't really need to know to much any ways, I'm sort of a procrastinator in case you cannot tell by the fat I still have shopping to do two days before christmas. ugh the fog is gonna be bad today I can already tell sleepiness is godawful even if I'm functioning my brain is on autopilot.

ob apt mixed feelings about it

I had a good apt baby's heart rate slowed like it was supposed to and he explained the blood panel of tests he was wanting to run (don't ask it's scary stuff). still he didn't make me feel judged he was patient and kind and answered all of my questions. Upon check out however. . . . .I overheard a receptionist talking to my ob doctor my doctor says well she was on steroids and a whole bunch of other medicines that she took herself off of. and then the receptionist says in a condemning voice "oh is that why she smokes marijuana?" I bawled all the way out to the car, I feel like these type of people think I'm deliberately harming my unborn baby and that the "legal" way is so much better. I wish I could print off all of the side effects of the massive list of some thirty medications I was on before I took myself off. I was told to be on low dose prednisone to maintain flare ups at the very least. side effects for the baby could included :cardiovascular, oral clefts, spina bifida, polydactylies, limb reduction defects/syndactylies, hypospadias. on the other hand marijuana : some studies show low birth weight and even that is controversial.

I have the urge to print off the facts and distribute it to every single person who sneers their nose at me when they learn I make my own weed pills, I manage a crippling disease by ingesting POT. and yes I am pregnant 16 weeks to be exact and I don't worry about the pills affecting my baby I worry about the inflammation attacking and not being able to stand the pain and the stress of that hurting my baby. I intend to stop as soon as the survival rate of my baby is high so that I wont have to worry about s/he being tested positive for it and the hospital calling 241-kids on me. When I stop . . . .I am barely going to be able to move walking will be total torture and suicidal isn't the word for how awful it makes me feel. My two already born children are going to suffer and there is literally nothing I can do about it. I am going to pack their cabinet with easily reached food and snacks. . . . .oh I'm not looking forward to it, I'd rather have my leg broken that's easier to manage than this. Screw all you judgmental a holes I am doing whats best for me and my baby.I'm not doing this to get "stoned" hell I take my pills before bed I don't even feel them working the only way I know they are working is because I'm still walking. I literally cannot  walk without being on steroids or these pills and it only takes about three days for the inflammation to be at full force.

perky but in pain???

thank goodness for my coffee it's about all I can attribute to my annoyingly good mood this morning, the whole wake up every hr n pee which I still did last night and my ribs hurt today, not tremendously but enough I'm aware of them with every breath I take. I seem to be on a positive movement this morning as I fill random people's inbox's with positive have a good day etc. I sometimes read back over my blog and think good god I bitch alot! good thing it's my own personal blog and funny enough this is the only place I openly talk about my pain levels and what I actually feel. People ask me how I'm feeling and the automatic reply is always oh I'm good usual pain nothing new, fact is this disease sucks ass and if I brought the actual pain into focus instead of pushing it away which is an odd talent to learn I guess cause my husband's knee swells with the weather and I'm confused as to how it can possibly hurt that much. Normal people don't learn this technique of a higher awareness I guess you would call it, but then to not have to I wonder if i would be a genius? :) yes I think that's how I'm choosing to look at it, I'm stuck with this disease because the world couldn't otherwise handle my massive brain :)

I saw a video of a man who under went massive spinal surgery to correct the horrendous stoop this disease can cause and it gave me a slight amount of hope except I'm allergic to most metals n they used actual screws and steel rods in the mans back. . . . ummm owie but def worth it if quality of life improves, how can you ask would I have myself filleted like a fish and turned into the bride of Frankenstein? All in the hopes of one day being able to sleep in a normal eight hours and stretch . . . If I was to attempt to stretch first thing in the morning I'd scream and wake up the whole house.


Today is gonna be a good day :) Tylenol down on my first cup of coffee got one kid off to school and you can walk through my house without killing yourself mostly. . . (avoid my kids rooms) And I am loved, m husband accepts me for who I am and sometimes is tormented right along with me because he cannot help, my children tell me daily I'm the best mommy ever, I have a wonderful sister-in-law who listens when I have bad days and doesn't judge me even when I'm baldly honest. I know there will never be anything that anyone else can ever do to make my life easier or less painful but it's nice to know when I can't pretend that I'm fine that someone will listen when I break. I have a lot of other wonderful people in my life but I don't let to many people see inside the pain . . . I don't like to admit to it or talk about it, those two r the ones who get to see inside my bubble and I'm not entirely sure they even wanna be there sometimes it's an awfully dark place.

Have an amazing day fellow A.S.'er's I am sending positive vibes and happy thoughts

sleep or pain

so I stupidly drank a bottle of water before bed last night and woke up every single hour to go potty, when I finally rolled out of bed this morning exhausted I may add, I was in very little pain. How can there not be some sort of even keel I can manage to get on where I manage to get enough sleep to not feel zombie-ish and still little enough that my back and ribcage isn't affected.

I would say I will try setting my alarms to continue on this odd occurrence but I can't stop yawning and day dreaming about a nap. ugh I would love an ice cold beer and a good nap. obviously not very healthy but alcohol used to be my pain pills of choice, I would get so relaxed and so much relief just from four beers. very very dangerous to my addictive personality on top of actual relief from the pain. . . . . . . I had the intention of fully writing a lengthy blog but my brain is literally shutting down in a fog I'm not connecting my thoughts very well. Another lovely side effect of constant inflammation is a brian fog that creeps in and all of a sudden your just kind of floating no real thought process going on and you can struggle but it usually doesn't help me. Although in my case right now it could also be pregnancy related, aside from tired n foggy having a really good day very little pain. . . .I signed up for OTIS online which is a registry for pregnant with autoimmune . . . .will explain more of that when I understand it better myself. Jeania Smith giving into the fog and sleeping on the couch.

Dr. Watt. . . . .I think I love you

so I went to a new ob yesterday because the one I was seeing only worked the first week of this month. The new guy asked me if I was tired n I said totally exhausted but then dealing with an autoimmune on top of it is what I think it's from. He says sorry to hear that, what is it I told him, he asked my pain level which is always at a five six, and then says wow that pretty high, and I said well I have a high pain tolerance he says you just get used to it, I said I had too.  I told him about my own prescribed meds and he didn't raise an eyebrow informed me there is a high risk group they have been consulting with once a week and he would like for me to be introduced to them. I am also getting the abnormalities scan not that I would terminate if they find anything but I'm really worried that the inflammation I feel spreading in my hips an sternum n ribcage is affecting the babies development. I go back next week.

I was so relieved to hear the heart beat! I'm getting so attached to this little booger please please let everything stay okay n healthy. My ribs are killing me this morning and my middle spine is starting to hurt daily, most of it is just annoying but that damn rib is pissing me off wish I could just reach in there and rip it out, would hurt less in the long run I think.

annnd Rhuemy Says ?. . . . .

I love how the x ray is printed some of the words like very mild and minimal, then you start looking up the big words behind it. . . . . . .bilateral sacroilitis, levoscolisosis, degenerative facet changes, and marginal osteophyte formation. . . .. . .I'm a little irritated as again the nurse says, "we think you have some sort of spondyloartropathy" . . . .umm OKAAAYYYY and then after looking at my x rays and discussing whether or not a c section is safe and being forced to actually do her job and look into my x-ray she has the nerve to tell me to keep my head up that there is still a treatment option available . . . remicaid infusions and that not all cases are as "severe" as mine. . . . .Way to confuse the crap outta your patient treat me as though I'm mostly normal just maybe have something and then tell me your sorry it's so severe.

The words in that big mess that really messed me up are the ones that said it was normal wear and tear for any person over sixty!? and how the hell can you call any new bone growth minimal? that's what osteophyte formation is thickening of bone and narrowing of disc space.. . . . . I suppose when you ask for the damage report be prepared for the horns. . . . . There is good news in here though while it is on its way most definitely, there is no fusion yet and I am grateful and thankful for that, most of the damage is in my L-3- my S-I joints which is my hips and with osteo I'm not sure if I should ask for a c- section I don't know if it is going to cause more problems. The nurse only stated that  it isn't supposed to interfere with a baby, umm okay awesome what about interfering with me? am I at a greater risk for breaking something? should I do it? She gave me the print out and told me to give it to the O.B. alrighty then.

I was also offered low dose prednisone to begin immediately or sulfasalazene both safe during pregnancy bla  bla bla, I was honest told her what I was on told her how much more of a relief I was feeling before I got pregnant and then she suggested remicaid. I don't feel like she heard me or understood any of my fears but at least I know the damage and sort of understand the risk and will talk to the ob today and see their take on it. I'm not looking a gift horse in the mouth there is no fusions yet and for that I'm grateful and thankful and excited at the idea of having a safe labor. I can't wait to see my baby and to begin to feel no guilt for the type of meds I am choosing. although I'm sure she could lose her job if her boss found out but the nurse who took my weight and meds when I told her I was on weed pills against doctor's order's but I thought it was better . . .she smiled and said of course it's against. Felt good to have a little secret to know that someone wasn't judging me for it

ginger and green tea

Have finally added it back to my diet n this morning is the first time in weeks I haven't woke up feeling like I broke a rib on my left side. . . . waking up is usually borderline traumatic for me I can barely breathe without it hurting in two diff place there is something in my sternum that's out. Dead center deep breathing makes it hurt sharp stabs of WTF? I feel really good not having that rib out though feels nice to be able to yawn n stretch without it being interrupted by knives shooting through my body.

Pregnancy wise I seem to b doing well I'm still really worried bout my little peanut your immune system is supposed to be suppressed during pregnancy when mine is constantly on over load any more I worry if any of it is affecting the baby. I have an appointment with the rhuematologist nurse on weds. I don't like the nurse she is the one who walked in with someone else's charts then told me I didn't have what I was diagnosed with. I wonder how they are going to handle the fact I took myself off everything? I wonder what they will say when I tell them I took myself off 20 milligrams of  prednisone cold turkey, that I went through withdrawals and hurt for a week but survived just fine and have controlled and managed me pain way better than they could. I still obviously am struggling but since I had the brain fart that I can attempt to treat this myself I've found way more relief.

I seriously wish that they wouldn't make the TNF's out to be some amazingly awesome drug, it is a band aid that doesn't stop or slow the progression and it comes with a blanket of side effects. Then again I know how desperate it can get to make the pain stop, hell when mine's at its worst suicide seems like a friend. I'm a little worried cause I've been reading a site that allows arthritis doctor's to post about their experiences and people in chronic pain are called whiners and made fun of and I'm not gonna lie I'm gonna walk in there with an attitude.  I'm a person and just because you think I'm whining about pain like a toddler means you do not understand this pain isn't like stubing my toe, I know what that feels like and I also used to be a cutter enjoyed the pain release I have a high tolerance when I finally come and ask for help it's because I feel the amount of pain a normal person would feel after being hit by a bus and ran over by ALL the wheels. I deserve and demand respect am so sick of being treated as a junkie goooooddddd!! if it wasn't for my baby I would never go back screw all doctor's they are all closet cowards n assholes!!!

RAAAAWWWRRR

I sort of had an emotional break down in the bathtub with my husband last night, I couldn't sleep for some reason. . . .being pregnant has turned me into an insomniac half the time. I wailed to the top of my lungs I don't want to be like this any more, that I'm so sickly jealous of the 50+ yr old people I see jogging that I wanna hit them with my car. I have for the most part accepted this is me, accepted I will always need some sort of pill to help me cope and not be suicidal with the amount of pain I live with every second of my life but just sometimes it sneaks up on me at how unfair this is how much it has already taken from me and I still mourn the person I could be but will never have the chance to be. I bawled and screamed for prolly twenty mins. He patiently listened and looked tortured that he could say nothing that would make me feel better.

Today I'm irritated with people who blindly follow what the masses say is true, ashamed to say I used to be one of them would sneer at anyone I saw smoking while pregnant. . . they did a study smoking actually helps my disease the biggest reason I quit is due to the fact of my ribcage is already affected and I feel as though I cannot breathe A LOT. I get mad quickly when someone pops off about weed simply because I've actually done my own thinking and my own research, they only publish the small inconsistent studies that say marijuana is bad they keep the control number small and like to insert people who are already sick in some way and then blame it on the weed. ignorance appears to be contagious, when will people start thinking for themselves? start asking for proof if it was a bill of some sort people would instantly say show me where i accrued those charges, medically however blind sheep . . . . .common sense flies out the window and mass hysteria follows. . . . . . . on a side note Chinese food made me very ill today

shopping nightmare

I went to two diff stores to go shopping as the local grocer is so much better than walmart and they have awesome deals usually on drinks and sides etc but without coupons or even really not knowing the flyer I can't afford to shop there it is insanely high.

I am in so much pain I am close to tears, . . . . .. I'm laying on my heating pad and praying for release and fighting back the tears. I told the kids I would help write them letters to santa but all I want to do is lay on this blissful heating pad and bawl. I even took my marijuana  pills this morning and the ones for vitamins that's supposed to help with inflammation. I feel helpless I feel trapped I wish I was home I wish I could take my kids to their aunties house to write the letters n so I could shower and try to ease the pain.

I'm scared this pregnancy is going to render me totally useless this is from two hours of constant movement and I'm thirteen weeks today I'm not entirely sure I want to imagine me further. . . . .. . I'm not really religious I feel that as long as your not going around and maliciously hurting people and you do the things that you know are the right thing to do then your going to be fine in the afterlife whichever it is. I keep preying in my head to whomever or whatever is out there to give me the strength to fight this awful disease long enough to bring my beautiful baby in the world. I will figure out the inflammation part of this. . .  . . .I don't know how but I will. I called the rhuematologist repeatedly today to try n set up an apt with no answer so I sent them an email. I have to find something to help, I will refuse what I don't feel is safe, there will not be any injection in this body or around my precious baby I can tell ya that but I am feeling a little backed against a wall and noone to talk to who will understand and again I'm in tears. . . . . .

so so tired

I wish I wish I wish for us to be home when this baby comes, I feel like I'm losing control of the mother I wanna be. I'm having trouble keeping up with homework with my already birthed children.I'm usually exhausted come bed time that I have stopped reading them books and I have done that since they were born literally slobbering little chunky monkeys who didn't even understand English and I was reading to them. I'm struggling with fatigue that's so strong I slept through alarms and missed getting my baby girl off the bus and picking up my baby boy from school. I'm feeling guilty and overwhelmed. 13 weeks tomorrow so I'm praying some of my energy comes back but if it's due to inflammation then I'm still gonna be tired, the pregnancy and disease symptoms are all blending together at this point I know my ribs and back are from my disease but the kind of detached exhaustion can be from either one and with my back hurting I know some of this has to be due to inflammation. I still haven't made an apt. with my Rhuematologist even though my O.B. told me too and it's pretty obvious she has no idea what to do to treat me and the baby. I suppose one of my biggest fears is that the rhuemy will attempt to put me on pain pills, or something else that I don't want in my body around my baby, I'm sick of doctor's period but even more sick of them just assuming they know whats best for me or my body.

I looked up an ultrasound of a thirteen week old fetus and I'm amazed that it already looks like a baby granted a tiny tiny baby but a beautiful thing to see. I imagine my little boy/girl in there just rolling around and I look forward to it so so much. To hell with this disease and to hell with doctor's if I thought I could handle the pain and not scare the beejezus out of my hubby and kids I would do this alone and at home but I am worried a little about the damage already to my hips that I'm not aware of. That's something else the Doc's don't think I need to know about my own body, the ob told me my ultrasound was "mostly" normal. The Ruemy tells me I have "some damage" what he doesnt mention is that in order for him to see that "some damage" on the x rays is that my body has to have been ravaged by this disease for at least ten years. I have no idea if the damage includes fusion in my pelvic region bone spurs etc.

I think I had cysts on my ovaries as about a week ago I felt sharp and really painful stabs on the sides and I've had them before so i know what they feel like so I'm assuming that was the "mostly" part. I think I really hate my O.B. she treats me like an idiot and appears to have no knowledge of autoimmune diseases. I would go somewhere else but it's really convenient it's about seven mins away

slugging along

I'm only getting about four n a half hours of sleep a night and it's really starting to take it's toll on me I'm exhausted and grouchy. It doesn't help that my four year old very large son randomly crawls into bed with me always on my side n always on top of me. With only those four hours you wouldn't think I would have laid in one spot long enough to stove up but my right side hurts every morning in my ribs. I cannot bitch to much as I will not soon forget the day I had without my pills in my system at all. Funny how you get used to a certain amount of pain and then forget how much it can actually hurt and when it hurts full blown your like I didn't have anything to bitch about before.

I wish there was a cure, I wish I wasn't afraid of passing this onto my kids, I cannot help but be afraid and wonder if it's selfish to want children with a disease that I can pass on. I wonder if they will hate me for it when they realize what I risked passing on. I also then think that why shouldn't I enjoy as many children as I want? I've learned to cope with mine and I do not wish myself unborn, I enjoy my life for the most part. Pretty sure I'm going to keep a head cold this entire pregnancy. I considered for a brief second that during pregnancy would be the best time for me to go vegan maybe and see if tha helps the pain but then I thought about a fried piece of chicken and yea I wont make it so not even gonna try to make some sort of promise to anyone reading this I don't have that kind of willpower. The only thing I hope for during this pregnancy is not to blow up to bad I have horrid eating habits but for the most part am not an over eater.

out of guilt I stop and the pain is to to much

At my o.b. apt. the doctor again informed me that I was risking my baby to continue to use marijuana. . .so I stopped it's been about two weeks and last night was my breaking point. I will lose my baby if I don't have something to stop the mind exploding pain from my disease. I was up almost all night back, hips, and ribcage in a constant squeezing breathe taking pain. I ended up on the floor desperately quietly sobbing into my pillow so not to wake my husband. I didn't want him to see me like that what good would it do if he had tried to touch me I would have screamed and woken up the kids. Point blank I have an incurable disease that literally cripples my body and my mind and this woman has no idea what she is dealing with. I am faced with the choice of pain pills and dangerous experimental drugs to try n keep the pain and inflammation at bay or a natural plant that carries the risk of low birth weight???????? How in the world can she make me feel guilty for doing something like this? when my only other option is strong opiates? maybe she should have done her research before telling me over n over I was harming my baby. I can tell you right now this pain and inflammation is harming my baby a lot more than me taking weed.

She quoted me a study that supposedly dropped your I.Q eight points. I looked up the study she was blindly quoting it stated that teenagers over the course of twenty years appeared to have dropped eight I.Q. points again let me state that it was over the course of TWENTY years and there is plenty of inconclusive studies that say that your I.Q. is at risk for slowly dropping over the course of time anyways. So let me get this straight. . .  .I can read and understand medical testing on marijuana better than my doctor or maybe she genuinely does not grasp what she is dealing with when treating me?

I feel utterly awful I can barely move today and have been sitting on my heating pad since i got up. My house is really gross but no way I'm going to loosen up enough to do anything about it today. My only goal for today is to make my pills so that tomorrow I can have some relief. I'm scared the pain of last night may have hurt my little one. . . . I wish I was far enough along that I could judge by the movements how he/she was doing.

puke one day starve the next

Pregnancy is turning out to kind of make me a mental case. . .  .one day I'm puking so much it hurts and the next I'm waking up at three A.M. feeling like I'm going to die of starvation soon. On the one hand it makes me feel safe because I know this little peanut is settled nicely enough in there to make me miserable and that all points to healthy development for him/her :). My disease is well. . . ..  my disease, the burn n aching is pretty much a constant right now and the hunched forward position I keep catching myself sitting in has to be due to inflammation that is probably out of control right now. I quit the smoking my meds I simply don't like to feel stoned. My pills only stay down half the time so I'm almost back at square one. The nerve pinched in my neck makes my right shoulder almost useless I'm always aware of how much I'm using it which is extremely annoying. I used to be the woman who would get pissed and do it herself no matter how heavy or awkward an object or task was I'd grit my teeth sweat like a pig and muscle my way through it. . . . . .. Sometimes I really miss that woman.now I mostly focus on being a positive force of nature. I feel that my body may be weak but my attitude and actions can be sweet and direct, nurturing, giving, and loving. I'll admit some days I'm simply in to much pain to accomplish the Mary Poppins routine but those days I usually hide so my nasty attitude doesn't affect the ones I love.

I'm on the verge of asking for some kind of nerve pill as the itching from what I've read is from nerve damage and I simply cannot express how much it itches I literally want to peel the skin from my body. I woke up at three am last night and proceeded to dig at both of my arms until they bled. I smacked my right arm over n over to no avail and finally rubbed it down with ice until both shoulders were on the verge of frostbite. . . . .I seriously hope that its just some sort of side effect of pregnancy and not gonna stick around forever . . . . I'm not sure it wont drive me totally batty. . . . . .As to my audience :) my numbers on my page views keep clicking up so I know someone out there is reading them I hope that someone is getting a benefit from my limited knowledge of Medical MJ. It was on the docket today to be legalized for small amounts of recreational use :) oh if only medical science was actually allowed to study and produce the amazing medicine that is found in this magnificent plant that is totally natural. . . .I simply cannot wait for the day that I can go to Walmart and pick up the miracle cure for my disease that I know is found in this plant simply from my own usage I know the right dosage gives me back my life. . . and for a scientist to be able to find the magic dosage without the stoned effect oh I'd be in heaven. . . .till then I'm an ASS and a pothead :)

nine weeks and counting

two days have passed and I've only puked once :) super happy about that. Maybe now I can start taking my pills as my back and ribs are slowly starting to feel like a sledge hammer was taken to them again. . . . .. .I was kind of hoping that it would go into remission while I was pregnant but I guess it's kind of a good thing it doesn't cause to be blissfully pain free for nine months and then BAM would suck really bad at least this way my pain tolerance will stay pretty high instead of shocking me. It seems as though I'm going to have every symptom of pregnancy this go around I have Erythema Nodosum popping up on my legs as of yesterday, I thought I had been bruising myself or something till I realized I've barely even moved in a week due to the crippling nausea so how the hell was I bruised and then I looked at them. . . .they are red and raised and puffy looking with hard knots in the middle and they hurt when you press on them. Of course I googled it as in my opinion the internet has the same amount of information as a doctor does if you just know where to look, and sure enough figured it out on my own. My OB wanted to send me to a nutritionist why I'm not sure but when the lady told me my insurance would cover eighty percent I was like well it can be more than like twenty bucks then right? ummm no the lady wanted a hundred n eighty I laughed at her and canceled my apt. I've even been considering a home birth just to stop all the poking and prodding and people acting like they know more about my body than I do, I understand that when small pox and the plague etc. was around people blindly followed doctors as they seemed to be magicians of life but honestly I find out more about my disease online than I ever have a doctor, i figured out how to treat my own pain without the help of a doctor. I don't intend to ever blindly follow again OH and the ob wanted me to see a nurse once a week. . . . .  .ummm WHY? to charge the crap outta my insurance? to send me needlessly searching for a baby sitter once a week and rearranging schedules to suit it? I think not, I realize I'm higher risk than average but women have been giving birth since forever without a whole lot of doctor's interference and I'm pretty sure my body is the one figuring out how to have a baby not theirs. doctor's and their I know better than you cause I read a book attitude is really pissing me off this is my body and my baby I refuse to be a guinea pig for them. You would think I offered the OB some rare disease that she stands the chance of curing the way she is trying to send me to specialist n shit, I got this lady leave me alone

still puking but holding weight

I am still not a hundred percent but I'm doing better slowly I am keeping almost all my food down and seem to throw up only a sludge and then lots of stomach acid, I go back to the ob next week so it is definitely something I am going to bring up. I have developed a maddening itch on both of my shoulders that is literally waking me up at night to scratch it I wanna chew straight through my own arms. I fight to finally get some rest and the I have to wake up to itch!? rly? I could seriously cry some days.

I had a great weekend we went to the mall kids got to ride a choo choo train around for ten minutes they loved it, I was pooped after walking a very short distance and I'm very sad to report that the smoking my meds is not working near as well as the edibles I am going to make some tomorrow in the hopes I get the potency right and can relieve the ever present burning sensation again. . . . . it isn't quite so strong I cannot ignore it yet but it is starting to prevent me from doing stuff again and I rly am getting irritated. Especially when I have just found a reprieve after four years of constant debilitating pain, to be losing that feeling is almost got me panicking and I've already played it out in my head where I ask the ob for safe pain meds. . . . . . . .I must stay strong and natural I've allowed the doctor's to poison me long enough I can and will do this without risking my life, liver, kidneys, etc.

My husband is still very supportive of me as he says the difference in my mood and well being is still way worth the social stigma of being a pot head. . . . god I love that man. he walked up behind me last night and put his arms around me and our baby and just told me he loved me and kissed the nape of my neck. . . . . . . .after all these years he still can take my breath away. I'm happy . . . .happier than I've been in a long time, there is no longer any negativity in my life and while it brings me some regret that I've lost a friend of ten years it also brings a great deal of relief. It is really sad when you realize that people aren't who you have made the into in your head. what's even sadder is that I believed it for so long. . . . . talk is so cheap, you can sit and say all the good things you want to but when push comes to shove if you just watch someone in their misery without making an effort to assist them then your a phony, your fake as hell and please no longer darken my doorstep.

15 pounds down . . . .thought being pregnant you gained weight?

I'm so utterly sick I have barely been able to keep up with my housework between the puking and trying to take a nap which I rarely manage to do between my kiddie's being sick and cleaning. I am totally and completely exhausted. I cannot keep my pills down so the pain in my hip is creeping back in and it is barely cutting through the fog of utter crappiness I feel. I have resorted to smoking my meds for the time being until I manage to get the puking under control. My husband doesn't like it when I smoke I think he feels it makes me look like a typical loser pregnant and smoking weed. I reach my seventh week mark tomorrow and kinda feel like someone should throw me a party, this is hard on my poor body all I wanna do is lay down even when I just wake up I wanna stay in bed and just keep saying over and over again it will totally be worth it in the end. I started my pregnancy at 195 and am now down to 180 obviously not scary news to someone not pregnant but my ob is threatening hospitalization. I still live so far away from everyone I have no idea what I would do if that happened. I have no one to watch my kids I've never felt as desperate to get back home as I do right now I need help and there is no help to be had. . . . . . .

I'm seriously negative right now and that's not me either I hate being negative but I just kinda feel a little helpless in my current sitch. I want my baby but my baby is making me so sick I can't take care of my other two babies. It's enough to depress the crap outta me I wish I had even one awesome friend here who would come in and watch my kids once a week and clean my house and cook my hubby dinner so I could just rest. The only time I feel half human is when I smoked a bowl, of course this isn't what you would want a normal preggo lady to say but then again I'm not normal and people can judge me all they want I no longer give a poo, but before you judge make sure you understand my disease and the choices I'm faced with. I still feel as though it is the best thing I could do for my own body and honestly my baby if I wasn't doing it I'm quite sure I would have pinched a nerve by now and my body cannot handle that kind of pain it literally makes me crazy let alone a little baby managing under that kind of stress. blah can someone else take the wheel of my life right now and wake me up when the baby gets here?

I was at peace with two

you know the funny thing is that I really was fine with two I was finally at peace with it after the heartache of losing my little one last year. I had the pro's lined up in my head my kids would never have to share a room with a sibling, I was done with diapers and the crying and screaming without me understanding what the hell was wrong. I could set something on the floor and not worry about the kids getting into it. I had convinced myself two was plenty and enough. Funny thing is that we didn't use any form of birth control to follow through with this decision. We have been together for 12 years though and I have been pregnant three times before two miscarriages (2003, and 2011) and one live birth (my son) we didn't think we had to worry about it.

I think I'm scared about how my life is going to change I'm very aware of my limitations with the two we have I cannot wrestle I cannot run, I can't even give rough hugs without it hurting myself, I can definitely tell an improvement in my movements and the stiffness and I am capable of so much more than what I was a few months ago. I have a lot of hope that at some point I'll reach a stage where there is no evidence of this disease that through my supplements of ginger and turmeric (which I cannot take while pregnant due to uterus stimulation) and whatever else I find that is anti inflammatory.

I'm scared of having a flare following the birth, the last time with bub was so painful it is burned in my memories, I couldn't even pick him up when I first would wake up I would literally cry out loud till my grandpa heard me from down the hall and came and got him for me it was seriously the worst time and the worst pain I have had dealing with this disease. I have no one I can ask for that kind of help from here. I wanna move home before the baby comes. I miss my family oh so much. the longer it is staying in there the more I am getting worried about the future, anxiety is awful.

exhausted

I'm so tired I am barely functioning, I manage to clean my house once a day but even that's a struggle right now I'm exhausted. I take my pills and my vitamins and my pain is well under control and managed and if I wasn't so damn tired I'd be so much more grateful, my right shoulder was healing pretty good and feeling tons better but I carried in like three bags of heavy groceries not thinking yesterday ad it hurts again today every time I sneeze it feels like I'm throwing out a rib. I'm still struggling with the right combination of heat and oil any ways and this latest batch takes six to do what two of a batch I made a cpl weeks ago did. I'm thinking this little bean is here to stay though no blood at all no spotting and best of all I haven't pulled my hip :). I simply cannot tell you how amazing it is to be off all these damn drugs and still be walking unassisted it's been years and years since I haven't needed anything. I remember using a cane before when I wasn't on meds and I have no need of it. My hips can be slightly stiff and slightly painful but it's nothing compared to what I am used to so I'm very thankful for that I think the pain is a bad stress on my body and makes it harder for me to carry a baby. Kiddo's refuse to let me take a nap the second my head hits a pillow I hear "mommy can I have. . . .can you get me. .. .etc.etc" I have had to remove junk food totally from their diets as they have begun to refuse anything that isn't junk food. 

20 min power nap and my house is clean

no more pain no less, I still feel the burn if I am on my feet to much and I can't walk very far without my hips suggesting we take a break. I took another pregnancy test just to be sure and it's still positive :) I believe I have lost my mind as I am so excited to be dreaming of what little one I am carrying. . . . .I shouldn't be getting this excited until I pass the twelve week mark. I know all the negative stuff I know I am starting over with a crying pooing screaming wriggly little bald alien. I don't care. . . .. . .shoulder still hurts but I'm getting used to it. Hips are plugging along mostly well and when I wake up first thing in the mornings my ribs are still aching I've began to wonder if the burn is actually fibromyalgia

scared silly

Okay so I spent the first week knowing I'm pregnant telling everyone that we weren't planning for it and that it's a surprise and I don't know if I'm happy about it yet. Hello I've always wanted a large family I have struggled with infertility the entire time I've been married I adopted my beautiful little girl and through her was blessed with my son. I truly believe I wouldn't have gotten pregnant with my son if I hadn't had my daughter, something about being around her stirred up my hormones and I truly believe she is the reason she has a brother. . . .will she be happy to learn of this in the future? that still remains to be seen as they r beginning to fight like cats n dogs, it's exhausting.

Yes, I want this baby freakishly want to hold and smell and snuggle another little creation of me and my husband, I'm terrified to voice it. Scared to begin to dream of the little one actually making it. If I lose it I need to be prepared emotionally. Already I'm putting my hand over my stomach and smiling so I know I'm in danger already, I can't help it I want this little one so badly. I have to believe everything will work out. I'm not religious and neither is my husband funny enough we have never argued over this fact it just is, the older my kids get the more I wonder about how to introduce them into religion as I intend to allow them to choose. Not being religious it still makes me feel beter to put fourth fervent wishes of my baby making it through gestation.

Jake has cautiously told me he is excited but now really worried about my health, not that I can blame him he is the one that has to carry me when I can no longer walk due to a pinched nerve. He is the one who gets to sit helplessly while I scream in pain. It eats him alive that he can't take this disease from me. He watches me for signs of limping signs of getting tired when we are shopping, when he is around I can't over do it cause he wont let me.

I'm cramping I keep telling myself its my uterus stretching but that doesn't stop me from looking at the toilet paper when I potty. For the curious few out there who do read my blog, yes I intend to take my pills throughout my pregnancy one I can already tell my anxiety level will benefit greatly two I think it had a lot to do with me getting pregnant in the first place we haven't used protection since my miscarriage last year and three I would be recommended to take steroids throughout it if I was still seeing a doctor. I have to keep the inflammation down. . . .. I'm convinced me pinching my sciatic nerve last year is what led to the miscarriage I am terrified of pinching it cause as sure as I'm sitting here pinching it would mean the end for my little one I just know it.

boy was I wrong

update. . . .I took a pregnancy test last night two days early and late afternoon. . . . . . .the test was brightly positive! So I'm working on being excited I'm still of course scared to lose it.

reality checks are terrifying

So I stumbled across someone's blog who goes into detail how over the course of fourteen years this disease killed her. . . . . .....systematically shut her down, I don't let my mind wander down the dark and dreary very often, I cant. If I thought that I only had fourteen years to go I would panic and feel scared out of my mind daily and that wouldn't do anything but make my thinning hair maybe go bald and that wouldn't help my self esteem.

I know my lifespan is shortened by this I know they are still learning the ins and outs of this disease and there isn't a whole lot of what their leaning that is any way sunshiny I haven't read up on the research since a brief glimpse showed me that the inflammation goes to the heart. . . . . . . .I am leading a blessed life, I have two beautiful children who r the light and spark of my very soul their laughter can make my heaviest heart feel lighter. I have amazing family, I know they all are waiting for me to ever ask for help and it's nice to know if this ever crushes me to my knees I have somewhere to go...... that thought alone is bringing tears to my eye's for me to ever need someone to help me that much with my daily living is flat out to much for my mind to handle.

I am not this disease I am not this weak person who cannot use her right arm right now. . . . . .I am not this crybaby who cant, I am someone who can. . . . . .I will figure this out homeopathic ally safely without adding to the risk I already face. I gotta go I just depressed the shit out of myself, I am not sure if denial is healthy but neither is laying down and saying okay take my body. this is my fight and it's the fight of my life i pray to whoever is listening to give me the strength to never give up, to feel the fire of determination and fight instead of the hopelessness and fear that I can't verbalize out loud to anyone but on here, to say out loud I'm afraid of dying from this I'm afraid every time my chest constricts that "this is it"  just sounds in my head so very weak and hypochondriac that the words can't escape my lips.

ginger stops the burn

so I haven't written in about a week because my right shoulder has still been really flared out and brings tears to my eyes if I move it the wrong way. . . . .that's saying it hurts A LOT. Yesterday it was almost like I wasn't on anything the burn was back in my upper back with a vengeance and I spent most of the day trying to get away from myself. When I can't ignore it I'd rather be anywhere but in my head, it's a trapped feeling it's a helpless feeling and I absolutely hate it. I burned and ached all day, every joint seems to filling with inflammation making nowhere comfortable and nothing safe.

After suffering all day I started to really think about what has been different and the only thing different was that I have stopped drinking ginger tea out of whatever reason I forgot mostly and I have to keep it frozen so it takes a few minutes to make....... three glasses of ginger tea and my shoulder was feeling about 50 percent better and the burn was gone. Needless to say I have learned the importance of not forgetting the stuff that works and a little effort is better than a lot of burn. I hate how I get when in pain I withdraw and hardly talk keep myself busy to the point of exhaustion and stupidity. I washed the truck yesterday and cleaned the house and whatever else I could to not sit down and be mauled by the kids. I feel tremendous guilt because I barely like being cuddled when I'm not in pain because my kids are so big now the cuddles hurt any ways even if I'm not hurting at first. But when I'm flared out I absolutely do not want touched. My poor kids are going to grow up emotionally scarred to my lack of physical love.

I feel better this morning feel a slight burn and my arm hurts on my first glass of ginger root and green tea followed by two of my pills. I feel more alert than I have in days that is a huge plus. I really didn't think it made this much of a difference good thing I'm not playing around with anyone else's health cause if a doctor was doing this to me I'd be pissed that he couldn't stick to what worked.
I still haven't gotten the nerve to go and get my license and make that doctor apt. I'm almost terrified of being dismissed and I know my Rhuematologist will be calling soon I've missed apt.s I can't hide forever but I wanted a little time to see if I can really get it working before I went in again. to be able to show them the marked difference and that it was working no matter how controversial and that my quality of life was more important to me than what is socially accepted as the norm. Although I personally am never going back I completely understand the desperateness of anyone who turns to the injections. yesterday alone was enough to make me think about the prednisone again and start telling myself that the damage was already done with the pred and I could maybe consider going back on it at least till the inflammation leaves my shoulder. . . . .Jeania Smith standing tall  although slightly hunched 

shoulder flare

so my shoulder has become severely inflamed and or  pinched nerve in my neck basically it's nerve pain and I can barely move my right shoulder again. I'm not sure how long this will last as it has only happened once before so I guess this is going to be a new recurrence, it's not totally unbearable but it is quite annoying I'm trying to paint my sons furniture for his room and the painting motion is hurting so it is ticking me off. I've began another batch of my pills and am very relieved to have figured out the prob with my crappy batches. In Oregon there are no dispensaries there is no where for me to go n just get my new meds I have to research it and figure it all out on my own. It's not that hard thankfully I suck at the math parts of it, there is an equation for oil to particles equation but mostly I just do it my own way. No further updates to speak of, my daughter is loving school and she is so smart in kindergarten and has a basic grasp of adding and subtracting and knows her ABC's and can count to twenty. She is on the list for kids who don't know how to tie her shoes and I would be right on top of this except with any part of my body consistently hurting I have little to no patience so I"m trying to wait it out or wait for the weekend so daddy can.He is such a good daddy, I hear stories of deadbeat and missing father's and it makes me appreciate him so much more.

I am still kinda bummed that this disease is something I will never get rid of. I think about it in the long term and it really scares me, I fear a wheel chair so so much. I don't feel as isolated since I accepted it, I figure the people who are my friends will understand when I can physically do something. The fatigue is back as well but I still am managing to get a lot more done than I would without the meds. I read somewhere that stopping prednisone will cause a temporary worsening of symptoms so I'm hoping once the pred is flushed the inflammation in my shoulder will leave and with it the fatigue. For the most part I'm still enjoying myself and I feel like I'm waking up from some sort of dream, I enjoy my family time instead of begging for it to end so I can sit on my heating pad. I'm still struggling to lose a little weight but for the first time in my life I'm really not worried about it I have so much going for me that I don't care. I have noticed a huge change in my kids as well with me more calm and relaxed they seem to be totally different kids. I feel kind of guilty for realizing how much control I had over my families moods. My husband suffers from that seasonal disorder so he is struggling a little right now but even he seems so much more relaxed, I rarely yell anymore and I am a screamer when I get frustrated, I rarely get frustrated and its a very welcome side effect of the meds, I was considering a therapist before I started this, that would have meant more pills and more side effects. My hair is still kind of falling out not sure how long till that stops, still no bald spots though thank goodness. Jeania standing tall and smiling

hip slip

k so the past three days have been a little scary, I was having trouble getting the potency of my pills right I was diluting with waay to much oil so I wasn't getting the full amount and the inflammation flared in my hips and my right hip slipped. I was in the tub when it happened i felt it but I thought it was sliding in cause I was laying in the bottom of the tub and I stuck my foot up to the falling water and felt it go inward not outward so I thought cool it's working on the inflammation. and the way the nueropathy works is that it slowly starts and the little warnings started coming with every step and getting more and more intense and painful. thankfully I made a good batch after three days of barely ne thing so I can report the pills shorten the pulled time. usually if it pinches it stays pinched for at least a week and then all of a sudden the pain intensity would dull and then it would take a cpl weeks for the irritating twinges to stop. I have went from thinking oh shit and crying because I thought well this isn't going to work I cannot take the hip pain it literally will drive me insane. I told my husband I was going to look into getting some sort of pin or hip surgery to deaden the sciatica or go back on the prednisone. There is no compromise when it comes to the hip pain I just flat out cannot take it and would do anything to escape the pain. One day after taking the right amount of my "meds" it slipped back in and I'm already at the annoying twinges stage. I'm so relieved :)

vellus

 so last night Jake my husband had to hold over so kind of out of boredom or whatever I took yet another shower as anyone with this disease or arthritis for that mater becomes almost aquatic because the warm water is so very soothing that made yesterday's count at three. I looked in the mirror when I got out and didn't have my glasses on so I had to lean in close n look in the mirror. . . . I have tiny hairs all over my face I'm literally furry. Thankfully unless you lean in real close you cant see them they are all tiny vellus hair again caused by prednisone use and can take a year to fall out. Really who knew all of this came from one tiny pill and a small dosage at that hell I take 50 milligrams of tramadol in one pill and I usually take three of those so the most I've been on prednisone is 60 milligrams . . . . . .Sigh. I'm hoping no more nasty little things come around now I just need to remember what date it was that I quit taking it so I know what to look forward to.

I woke up this morning with the same pain in my ribs and a little in my back, I've been riding my bike for at least ten minutes every other day and my hips seem to be plugging along I have a few random slightly painful twinges but so far I'm still walking. The thought of actually slipping something is my greatest fear and how to explain what that feels like is almost impossible one it hurts to the point of me going mad literally just insane from the pain, then add the helplessness I feel because I have no choice but to move as little as possible and wait on the couch until it heals which is usually weeks. I'm afraid of it . . . . .that's putting it lightly I'm terrified of it. Last year at this time I was pregnant. . . . .I pulled my hip and could barely walk across the room, I took low dose aspirin I was that desperate I was out of my mind with the pain every time I took a step, I'd grind my teeth together and push myself as hard as  could just to go to the bathroom and barely refrain from screaming when I had to bend to sit or to stand up once I was done. I lost my baby . . . .. .. .it is something I will always wonder if I caused because I couldn't take the pain. . . .... . .. . I researched it first it said it was beneficial in some pregnancies so I hold onto that as a thread of maybe it wasn't my fault, I wanted my baby more than anything and the pain that I feel even now is still enough to make me cry I miss my little peanut and I will feel guilt the rest of my life.

I took three of my own pills when I started typing and in the time it has taken me to write this the pain and stiffness has already left enough that I can stretch my arms up and bend backwards a little. . . .the stretch normal people take so much for granted I now get to remember how good it feels. . .. . .

skin is slowly clearing

my legs were beginning to look a lot like someone with diabetes the skin was almost see through a couple weeks ago and I'm really happy to report that they r looking good. the bruises are gone and the scars that were purple have turned to a pink and look to be healing more and more. My face is still having some steroid acne spreading around it went from my chin to my forehead for some reason but even it is less and less. I woke up stiff and just kind of edgy today but not a whole lot of pain it was in the bottom right side of my ribcage and nothing sets my day off to the wrong start than waking up and not being able to take that first morning deep breathe. I took a shower and popped my pills and it faded pretty quickly. I love how after I take my pills I can put both my hands straight up and stretch a little I totally forgot how good it feels just to stretch your trunk. To be clear I still feel pain but on the pain scale it rarely goes above a two or three and before this it stayed at a seven or an eight, having been used to such a high amount of pain the almost tenderness I now feel is so easily ignored.

I am now trying to lose a few pounds as I have packed it on in the months since I've been on the prednisone twenty pounds or better I think I weighed in at 174 before I started pred and I'm now at 190. . . . .I'm hoping it falls off in no time but honestly I'm less stressed or determined about it than I am just enjoying my new found life. I still experience fatigue almost daily but from having a four and five year old constantly awake and running around nap time isn't something I could enjoy any ways. I have horrible self control when it comes to dieting I have a really hard time saying no to the kids fruit snacks and to the husband's lunch snack cakes, I go past the cabinet and I have to stop and look like something healthy is going to be in there.

I am still drinking the ginger root tea with a green tea bag in it and although it tastes like warm poo I have a thought that maybe it helps reduce my incessant need to munch. I have drank twice since I started my new therapy and it's almost like my body is totally rejecting it. I get so sick the next day I can't stand to hardly eat and this last time it took me till four in the afternoon to even get out of bed I had seven beers and spent the next day with a hangover so bad you would have thought I drank a fifth of whiskey. One of my biggest motivators to drink was the pain I always felt in my back and my ribs and ignoring it by the end of the day was impossible so I drank and almost on a daily basis. This is not something i would ever admit to the doctors with how much pain meds they had me on which by the way I have only taken like six ultrams in three weeks. before I could take six in a day and it wouldn't touch it it would dull it a little I quit smoking and I quit drinking and I'm trying to lose weight hell at this point if I wasn't so happy with how much I have improved I'd crack a joke about being nunish.

Even my marriage is improving, I think that is due to me having more patience and I'm not as exhausted as I was. Before I would take a nap and be in bed by the time he got off work at eleven so we barely saw each other now I rarely nap and I stay up with him to watch a movie almost every night. My cage of pain is lifted, my life is returning to my own and I wish there was some way I could shout the benefits of all of this to every person that has AS, I've suffered in silence and in so much pain for so long it's really hard for me to not reach out to the support pages that I am a part of and scream the benefits. I'm not naive I know this isn't the choice many would take, I know what I risk but it's worth the risk, before this my life was so painful I didn't look forward to my days and when I woke up there was so much pain I pushed myself to get things done and literally couldn't feel anything but the pain. My greatest hope is that the government makes it legal gives this relief to other who really need it.

steroid acne

I haven't posted in a couple of days due to the surfacing of a couple things that has slightly depressed and or worried me a little. I've learned that the flu like symptoms i felt could have actually turned really bad and would tell anyone reading this do not stop cold turkey it is actually life threatening as your adrenal glands could have completely shut down while on pred. Thank god I'm done with it, however the effects are still lingering and quite annoying, I have acne really really badly the kind that's under the skin and itches like mad and then hurts when u scratch it. Hot showers make all of the spots itch worse so my favorite pastime has turned into a scratch fest. I have been noticing pain in my right hip radiating down my leg and of course I'm worried it still hasn't full blown flared but I am definitely afraid.

I woke up this morning with a headache think it's due to too many pills at bedtime i took four the night before and woke up in alot less pain so figured five would surely take it all away right? wrong, too many has the opposite effect I guess everything hurt. I called in my ultrams today and took three already so it's still not really gone away. I rode my bike two times today hoping maybe tomorrow i will wake up and there will be no pain in my hips again. I have a theory it is either the garlic or the exercising thats keeping it out of my hips and the garlic gives me the nastiest gas. My poor husband gagged n ran away last night, i laughed so hard i almost pee'd good thing that poor man has a sense of humor.

I may be worried that the inflammation is coming back but I can still say I'm done with the pills I'm done with the injections give me pain pills sure the rest of it can be shoved where the sun don't shine. I'd rather go through my diet and exercise and call it good I'd rather not risk cancer I'd rather keep my hair I'd rather not develop some other horrible disease as a side effect of the drugs I'm still confident this is my best course of action and I'm still gonna have bad days evidently but my mood is still mostly positive. Although I have to say I think prednisone affected my moods so very much I dont feel the rage any more I don't get stressed over hardly anything and I like that so very much

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.

humira, and positive thinking

I've been switched to the humira and took that shot last week, really good thing about it is that it's every two weeks, I vomited all day but so far no extra heart palpitations. I've also added a blood pressure pill to my regimen, needless to say this is a bit daunting, doc said it has nothing to do with my diet all my cholesterol is in the right place meaning that no matter how holistic I tried to approach this I am not in control of my blood pressure. oddly enough I do feel better from this little pill, I don't feel my pulse pounding when I go from sitting to standing which I have felt for quite some time. Tons of other Little small things that I've noticed doesn't make my blood pound like it used to. I also tried to go on an anti depressant but only took it for about a week before I just quit, I had a friend staying with me and she couldn't find my son, she came in my room and tried to wake me up like shook my foot trying to wake me up and I didn't budge thankfully my son was actually squished under the covers with me otherwise this could have turned out really really badly.

  I feel no difference yet with the biologics, well maybe a little better in the morning but still stiff and still hurting on a pain scale its went down from about an eight to a six, but this could be because I now am taking naproxen at bedtime again, its eating my stomach I have acid reflux all day, I still fight the urge to take a nap every single day, I hate feeling this tired, and every time I take a nap I feel guilty like I have given up on myself and am denying some awesome thing from happening if I could just stay awake. Humira is forty dollars a month, pain pills thirty, stomach pill fourteen, muscle relaxer seven to ten, doc apt. twenty plus gas, its adding up quickly we are spending over a hundred dollars a month on my med bills and that not even paying for the x rays that are now in the thousands and the hospital bill from last year, this may sound awful but I just throw them away there is no way we can get on top of them and hopefully once we have a set plan in place to handle all of everything if I can just keep current on the doc apt and the meds then after seven years the others wont count any more.

   I still am hating it here alone in the middle of the desert, my friend was staying with me and thankfully took over dinner duties etc. during injection day last week, I've also moved them to Jake's days off so I wont be alone. Still hoping some magic happens soon my back is fricking hurting even as I type this, I wanna wake up in no pain!!!let it hit me sometime later in the day for the love of Pete not when I first wake up.

  Someone posted something I feel very thoughtlessly to my wall about how the power of god and positive thinking would heal me. One I do not believe in the human god that's in the bible, however I'm very spiritual and believe wholeheartedly in the power of positive thinking and or positive energy forces etc. and if you knew one ounce of me you would have known this would insult the crap outta me, I have done nothing but keep positive about thinking this would just go away until I literally broke, I forced myself every single day to function as if it didn't exist, to repeat a mantra in my head "you can do this you can do this, don't let them See it hurts, if they don't see you win" I only broke out of my isolated hell of pain and torment when I was suicidal, this blog is a direct result of my having "hid" it. This is me and no amount of positive thinking herbal diets cleansing my aura etc. is going to make this disease go away, believe me I've tried, went totally organic,cut out meat, carried certain stones in my pockets meant for healing, read several Wicca prayers meant for healing, etc. etc. etc. No asking a church to pray for me did not come into play nor will it ever, if there is a god I do not believe I have to follow cult like behaviour to receive his blessings. I do not believe the hatred those people spew, next time you wanna help and bring me some kind of snake oil, please just don't it's sooooo insulting

Jeania Standing Tall

enbrel wasn't magic

in fact had an allergic reaction to it that made me second guess even trying another biologic, the fear of having something happen to me while I"m alone with my children is to high of a risk for me to continue to take it. I'm used to hurting at this point it is my life, it is who I am. Those that love and truly love me when I have my bad dasy will love me any ways and forgive my anger. I'v decided the nurse practioner that I'm required to see four times in between seeing the doctor is an idiot. She had the wrong x-rays up, told me that I didnt have ankylosing that it is undifferientiated sponyloartropathy, I responded the damage was signifigant enough that I didnt need and mri that the doctor said I was a classic case, she pulls up the one of my hips with proof of sacroilitis and says sorry. Mind you I'm in her office because enbrel caused vomiting couldnt keep down water, it isn't the magic drug I was praying for it to be, was causing my heart to speed up so much I couldn't exert myself at all id throw up. So when she states this my jaw kinda hung open n I felt so much anger at this litle woman in my mind she was trying to tell me she didnt believe me that I was making it up, I heard so many other doctors in my head all saying the same things over n over" the tests were all normal" F_______ Youuuuuu!!!! but what choice do I have the doctor himself is hard to get into and the only one in the area so I gotta put up with the moronic woman to get tot he gold at the end of the rainbow.

I tried to ask her what my options were like she put me on humira and I start that next week, but if I fail this one if I have a bad reaction to this one I'm done with the biologics until A. I have a live in nanny or something, B. I am where I can call someone and they can be at my house in no time.I tried to ask what is next and she cuts me off and tells me that "we aren't to that point yet don't even go there in your mind" ummmm I'm not allowed to know what comes next? I felt dismissed and treated like an idiotic child was not a good apt.

I went to my general practitioner the next day and kind of fell apart on the poor man, my blood pressure has been up the past three doctors apts, I told him I felt like they were shooting guns in the dark and didnt know how to fix this, I bawled while telling him I wake up feeling like someone took a sledgehammer to my body while sleeping, and that I was losing hope I put to much on the enbrel was hoping for it to be magical for me and it wasn't and I didn't know what to do. The stiffness is spreading into my neck, in the past two months I have had chostochondritis, that literally put the fear of god into me I thought I was having a heartattack with my poor children just watching, my right shoulder has lost it's movements I'd say its been reduced to about half, I failed enbrel. I'm now on an anti deppresant, blood pressure pills, pain pills, muscle relaxor, vitamins out my wazoo, prednisone which I need to get off of asap but it is the only thing keeping me walking the sacroilitis gets so bad I literally am bed riden which makes my ribs hurt even worse, no movement at all makes it hurt too. Trying to educate myself on this is almost impossible not to mention depressing so for now I'm just gonna plod along taking more and more drugs. only thing he said about the blood pressure is that it's not cholesterol related that changing my diet wouldn't change anything, I'm not sure if it is disease related or sideeffects from everything else but funny enough I do feel better, tired but better.