friendly advice.. . . .or lack of understanding?

I have had many many many well meaning people give me advice on what to do and how to help relieve the pain and stiffness that comes with this horrid disease. Often the ones offering the advice simply do not understand that this disease is not arthritis and reacts differently for every single one of us. Some lucky ones with this disease are fully capable of running and walking and exercising (so jealous) and even a few of those smug A-holes have offered their well meaning well maybe you should try this and just "push" through the pain.

My response is to typically smile and agree to try whatever dumb thing they popped off with, because to stand there and explain the effects that MY disease has on MY body would simply take to long. I know any advice that is offered comes from a place of sympathy and an attempt to understand where I'm coming from and an attempt to offer a solution which a lot of people are almost compelled to try to "fix" me. I simply don't have the patience to explain to them all the things that I have tried and am currently trying to learn to live in this body. I don't see the point in being rude and or hurting their feelings when the world is already full enough of idiots who have no control over their nastiness or ignorance. I prefer to look at them and smile and pretend to listen so that they feel they might actually be helping. After all if someone I loved was going through something and I offered my opinion on what I thought might help I imagine what it would feel like to have my well intentioned words thrown back into my face. I would be hurt because for someone to take the time to think and or look up whatever illness or problem and spend enough time to actually come up with something to tell you thats not coming from a bad place.

just had an interesting conversation actually with a friend of mine. . . . ME:"I'm gonna need to lose some thunder thighs after this baby gets here" Friend: go to the gym I'll pay you burn your extra chins off" nice laugh pause and me: well that would be awesome of you but no sense in a gym membership as all I can do is cycle or swim" friend: awww come on you can get on a treadmill your bones fuse together from lack of use right? so if you use them then that'll make it better right?"  Me: no, I don't have to do any thing and my bones will fuse however if I stress my joints they tend to pop out of place and cause nerve damage" Friend: that doesnt make any sense your just making excuses to not run your extra ass off".  .. .. my feelings are getting hurt at this point and I'm getting frustrated as this is a pretty close friend. . me" no seriously I can't run dude, not from lack of wanting to trust me it used to be my favorites thing to do when I am stressed out" Friend: awww come on can't hurt to try". . . . at this point before I can even say any thing my dear husband jumps in and you can tel from his tone of voice he has been listening and feels the same way I do Hubby"back off man she really can't run her body can't take it and her hips will come out of place and it hurts her to the point she cant get off the couch I'll have to carry her around leave her alone!"   Friend shut right up and flushed a little, I sorta felt sorry for him but super puffed with pride that my husband understands even if no one else does.

It may not come from a bad place but others need to learn to listen instead of judging and condemning what they do not understand. Sometimes compassion needs to be taught even though we are all adults we forget that behind every action that we believe to be silly and or stupid there can and probably is a really logical explanation.



My own personal feelings on this is that I've tried every diet, attempted exercise, I still keep an open mind and an open ear, just as I would like to change someone's life by offering what I have learned that works for my body, 

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