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. 

enbrel week two

These humongous needles bruise the crap out of me, I took the shot after my shower this morning and wasn't hit immediately with the nausea was thinking things were gonna go okay for all of about an hr, then proceeded to throw up twice, barely manage to throw food at the kids and proceeded to pass out for the past two n half hours. I feel like I ate a smelly ball of garbage my stomach is burning and queasy but there isn't anything in there. The familiar burn ache in my back is still there, n to top it off the side effects are making me unable to do a damn thing to my house and my husband left it gross as hell. I need to clean really really badly and think if I manage to just get the bathroom up to my standards I'll feel better. Feeling little sorry for myself not gonna lie. I want my house to be clean for the fourth of July just in case I manage to meet a few new people, and I'm dragging such ass I don't see how I'm gonna get it done.

Another of the massively huge disappointments of being here, I would call for help today but I have no one to call.I have one friend whom I know would be here if she could but she lives three hours away, I have no support system as my children have sat here watching cartoons and terrorizing the cat for the two n half hours I literally passed out on them. please let there be some sort of magic under these big ass needles. I miss the anxiety that used to have me as a military wife on my hands and knees with a toothbrush before people came over, not so much the inability to sleep because of it part but the energy to clean like that without drugs, I could pop a cpl Vicodin and that may help I suppose but I'm throwing up already and those things are not something I want to waste by throwing them up. sadly they are a lifeline to even my best days. I consider my best days is when they r working enough I can resemble the work horse I used to pride myself on being.

starting to lose hope in the enbrel, still hurt every morning, still burn all day, I've puked more today than I care to count. my stomach is doing that ache where there isn't anything in it but if I put something in it I'm puking. today is not a good day. . . . .funny it started out pretty good was sunshiny n pretty Vicodin kicked in pretty early was preparing for the fourth, now have to sit back and go at a snails pace and just hope to accomplish some of my house and not feel like a failure because I can't do near what I think I should.morale of this post, this crap sucks the life out of me, I hate it, I feel weak because it does makes me feel like a whiner, like I'm not woman enough to handle my business. My mood today has swung from one end of the pendulum to the other, the kids were awesome while I napped and in the few hours I was trying to drag myself around they threw boxes in the little swimming pool and took tire sealant for a kids bike and poured it in for good measure.