enbrel has not taken any thing away as of yet, still same old same old pain, waking up every morning feeling as if I've had some sadistic asshole take a sledge hammer to my body, followed by sub zero temperatures to freeze my back solid. I've had two more "attacks" last night's wasn't that bad only lasted about ten minutes. Today's was just as bad as the first day, it fricking hurt and it's scaring me to death. I felt almost like I was going to pass out. I'm not a hundred percent sure it's not my heart any more, the pressure is in my neck and it literally almost suspends my breathing, talking and moving. I'm not entirely sure what to do about it, there is an urgent care here but I don't want to take my kids, as I know it is going to take hours, they will probably hook me up to a EKG and what good is it going to do when none of them know what this disease is. I know they will do the same thing that they did in PO dunk BF E, ask me what I have and ask me what to do. I'm exhausted now feel like I ran a marathon and lifted weights with my boobs my chest is sore.
I wish my family was here, I'm to tired to really think or type today but thought I would update on the enbrel tapering the prednisone may be whats causing the chest spasms but I won't know for sure till I'm totally off them. I'm going to go and take a nap.
Tuesday, June 26, 2012
Sunday, June 24, 2012
I'm home, first enbrel shot
Pulled in yesterday morning around five am my son is still on Ohio time he kept me up most of the night on the train and then no nap yesterday and is now awake at barely seven am. It honestly felt really good walking in my house, I was afraid I would feel nothing but trapped and panic, but surrounded by the home I have re built for my kids and myself and my husband I am filled with a sense of pride and I felt good walking in. We started over with literally nothing at all, everything we had we got rid of sold or just left when we left Ohio the first time. I lived through the heartache of losing everything and found the strength to stand again, through one of the most spectacular woman I have ever had the good fortune to meet, she allowed me my husband and our two children to move in with her, she knew the troubles we were facing and she offered her home in the hopes that it would save my marriage. It did. . .... I have walked a close line back and fourth with my marriage and anytime I really start to consider divorce as the final way out instead of fighting and or fixing it, I look at the life her children now lead, the life she now leads, the life her ex now leads, marriage is the hardest thing I have EVER done. I'm riddled with a disease that makes wanting to wake up every day very hard and it is nothing in comparison to the work my marriage requires.
Part of the panic about my return was because I have felt like the crap I deal with in my own body wasn't worth it to my husband to fight through, we have fought during my absence where I have informed him it has got to get better, and much to my extreme happiness he has manned up. He was on that platform yesterday and had tears in his eyes as he was on his knee's with roses in his hands for me while he bear hugged his children, he had gotten them both small toys and had them sitting in their seats when they got in the truck, he held my hand and kissed my wrist all the way home. I will never leave when I can see so much effort, so much love just waiting for me. Mistakes are made every day whether or not your willing to fix them is what makes a relationship. I don't believe in divorce, my confidence has been shaken more than once but I usually come right back into my own head, we have a family, we made a commitment and if that means dragging each other when we can't walk then so be it. Marriage isn't always pretty, every now an again you gotta air the dirty laundry in order to know it needs a washing.
I took my first embrel shot yesterday when I got home shortly after a shower, the needle in that thing was massive n it fricking hurt! burns like a son of a beech going in I sat there a little surprised as I am no stranger to needles and didn't really expect much but like a needle prick, this was like a needle punch followed by a burning sensation and I had to hold it still with pressure on it for 15 secs so the full dosage was pushed out. If it works whatever so worth it not even a blip on my radar in comparison to everything else dealing with this crap does to me. I had some sort of attack while I was riding the train second day in, I was laying down snoozing n totally relaxed when sharp stabbing pains started shooting across my chest, I almost panicked thinking it was a heart attack as it hurt that bad, there was so much pressure I couldn't take a deep breathe. I sat straight up n took a vicodin, a muscle relaxer, stomach pill, and four naproxen. Wasn't sure which of them would work but I wasn't about to call for help while I was in the middle of goodness knows where with my little one's surrounded by rude as hell train staff. I text ed my husband back and fourth for a full convo, he was telling me to ask for help n I was hiding under my sheet forcing myself to breathe through it. . . ...I was honestly scared it was a heart attack and my only thought was that my kids were going to be terrified. Logic in my head told me that it could be anything and to remain calm, I guess that's one good thing yrs of E.R. visits telling me it's all in my head is that I now have the extreme calm to ride out extreme pain, what choice did I have? call for help? no x rays on board no trained med staff, and if they did have one lol think they had ever heard of my disease? My support group suggested costochondritis which upon researching does appear to be what it was, I missed a dose of prednisone. I start the taper from prednisone today really really hoping I don't have a bunch of mini heart attacks as my body rids itself of it.
No improvement on symptoms yet, still burning, ribs still aching, hips have developed a painful ache thinking because sitting on them for three days wasn't exactly good for them. hurts to walk a little, chest feels tight and hurts to take a deep breathe. Here's hoping embrel is the magic answer, standing tall and really really hopeful.
Part of the panic about my return was because I have felt like the crap I deal with in my own body wasn't worth it to my husband to fight through, we have fought during my absence where I have informed him it has got to get better, and much to my extreme happiness he has manned up. He was on that platform yesterday and had tears in his eyes as he was on his knee's with roses in his hands for me while he bear hugged his children, he had gotten them both small toys and had them sitting in their seats when they got in the truck, he held my hand and kissed my wrist all the way home. I will never leave when I can see so much effort, so much love just waiting for me. Mistakes are made every day whether or not your willing to fix them is what makes a relationship. I don't believe in divorce, my confidence has been shaken more than once but I usually come right back into my own head, we have a family, we made a commitment and if that means dragging each other when we can't walk then so be it. Marriage isn't always pretty, every now an again you gotta air the dirty laundry in order to know it needs a washing.
I took my first embrel shot yesterday when I got home shortly after a shower, the needle in that thing was massive n it fricking hurt! burns like a son of a beech going in I sat there a little surprised as I am no stranger to needles and didn't really expect much but like a needle prick, this was like a needle punch followed by a burning sensation and I had to hold it still with pressure on it for 15 secs so the full dosage was pushed out. If it works whatever so worth it not even a blip on my radar in comparison to everything else dealing with this crap does to me. I had some sort of attack while I was riding the train second day in, I was laying down snoozing n totally relaxed when sharp stabbing pains started shooting across my chest, I almost panicked thinking it was a heart attack as it hurt that bad, there was so much pressure I couldn't take a deep breathe. I sat straight up n took a vicodin, a muscle relaxer, stomach pill, and four naproxen. Wasn't sure which of them would work but I wasn't about to call for help while I was in the middle of goodness knows where with my little one's surrounded by rude as hell train staff. I text ed my husband back and fourth for a full convo, he was telling me to ask for help n I was hiding under my sheet forcing myself to breathe through it. . . ...I was honestly scared it was a heart attack and my only thought was that my kids were going to be terrified. Logic in my head told me that it could be anything and to remain calm, I guess that's one good thing yrs of E.R. visits telling me it's all in my head is that I now have the extreme calm to ride out extreme pain, what choice did I have? call for help? no x rays on board no trained med staff, and if they did have one lol think they had ever heard of my disease? My support group suggested costochondritis which upon researching does appear to be what it was, I missed a dose of prednisone. I start the taper from prednisone today really really hoping I don't have a bunch of mini heart attacks as my body rids itself of it.
No improvement on symptoms yet, still burning, ribs still aching, hips have developed a painful ache thinking because sitting on them for three days wasn't exactly good for them. hurts to walk a little, chest feels tight and hurts to take a deep breathe. Here's hoping embrel is the magic answer, standing tall and really really hopeful.
Monday, June 18, 2012
going back
To oregon in two days and my anxiety is so high I can barely breathe. I slept last night with the help of muscle relaxors and a pile of pillows I actually slept eight and a half hours. I cannot remember the last time I slept that long, had to take a hot shower this morning for about twenty minutes but it was worth it to sleep. I'm stiff as always ribs hurt as always back hurts as always. . . . .blogging today to try to vent some of the misery I feel at the thought of leaving my support system. I haven't felt alone since I got here, the very idea of leaving and my walls are going up, I have to. . .to deal with this alone I can't aford to crack can't afford to need anyone to pick up the slack. I know I'm strong enough, but I really don't want to. I don't want to pretend anymore I don't want to have friends that are only superficial and have no idea whats going on in my life. I don't see the point of them, but how do you make friends knowing your only going to leave? And then when is it the right time to mention I fight a horrible disease everyday and hey it hurts alot and sometimes I will seem bi-polar, but I promise I'm a good person. Please be there for me if I call you, please understand I'm emotionally one of the most scarred people you will ever meet, and randomly will shove everyone away out of fear of abandonment or not being good enough or worthy of someone's love.
How am I going to do this? A huge part of me doesn't care what's right or wrong. I know whats going to happen, I'm going to push myself back into the woman I was when I got here. I'm going to shove everyone away as hard as I can, because if they see how weak I am I crack and I cry and I can't do it. When I shove them away somehow I know noone is watching me noone cares what I do or how I do it, and then I push myself. I will become the bystander in my own life again because honestly I'v been thinking alot about this and it's because I am not someone who is okay being away from her family. My definition of that has definatly changed, the people who once meant everything to me are now slowly fading by their own choice, kind of mine to but I'm okay with it. My mental well beaing has taken a beating because of this disease, because of the anger I used to deal with it instead of reaching for help. I wish I could just move my husband back here. I'v been offered friendship and family through a couple people up there but I don't allow them to see into me, I don't allow anyone but my family that close. I don't have the energy anymore to keep up my pretenses.
I want to be seen for who and what I am, I want to be loved in spite of all my short comings and for people to understand I may have a disease but it doesn't define me, being here has given me a strength to believe that myself and I have pushed myself to exhaustion testing my own limits here, not only to see if I could do it but if I hurt myself I had someone to pick up the slack. In oregon I don't have someone I can call if I hurt myself I will be alone. . . . .this is gonna be okay, it's gotta be. I don't wanna go doesn't come close to expressing the fear I have in my chest. My head is really scrambled this morning and the fatigue is setting in, be it from emotionl turmoil or the disease heck the two go hand in hand, I start feeling tired from either feeling sorry for myself or because I don't realize how much of my body is affected by this horrible stuff. When I lay down at night I relax all my muscles and the pain immeaditaly answers, and I stiffen back up to try to make it stop, it's almost as if my muscles are trying to keep my bones in place and when they let go the bones hit nerves and shoot pain everywhere. I am only kind of aware or my muscles being tightened all day its a burning sensation that can make itself a screaming presence once in a while. Any ways my thoughts are getting all jumbled around, this was suppossed to help clear up my thinking and I'm confusing myself typing.
Basically I don't want to leave, I have healed in more ways than one since coming here, due largely in part to my sister's preggo wife who has selflessly listened while I have emotionally threw up about everything and has shown me how to be me again, n she loves me anyways, she thinks I'm nuts and confusing but she loves me and I know I could call her at four in the morning throwing up sick screaming crying drunk n she would answer. . . .I love you amanda, thank you for loving me. I'm afraid.....
How am I going to do this? A huge part of me doesn't care what's right or wrong. I know whats going to happen, I'm going to push myself back into the woman I was when I got here. I'm going to shove everyone away as hard as I can, because if they see how weak I am I crack and I cry and I can't do it. When I shove them away somehow I know noone is watching me noone cares what I do or how I do it, and then I push myself. I will become the bystander in my own life again because honestly I'v been thinking alot about this and it's because I am not someone who is okay being away from her family. My definition of that has definatly changed, the people who once meant everything to me are now slowly fading by their own choice, kind of mine to but I'm okay with it. My mental well beaing has taken a beating because of this disease, because of the anger I used to deal with it instead of reaching for help. I wish I could just move my husband back here. I'v been offered friendship and family through a couple people up there but I don't allow them to see into me, I don't allow anyone but my family that close. I don't have the energy anymore to keep up my pretenses.
I want to be seen for who and what I am, I want to be loved in spite of all my short comings and for people to understand I may have a disease but it doesn't define me, being here has given me a strength to believe that myself and I have pushed myself to exhaustion testing my own limits here, not only to see if I could do it but if I hurt myself I had someone to pick up the slack. In oregon I don't have someone I can call if I hurt myself I will be alone. . . . .this is gonna be okay, it's gotta be. I don't wanna go doesn't come close to expressing the fear I have in my chest. My head is really scrambled this morning and the fatigue is setting in, be it from emotionl turmoil or the disease heck the two go hand in hand, I start feeling tired from either feeling sorry for myself or because I don't realize how much of my body is affected by this horrible stuff. When I lay down at night I relax all my muscles and the pain immeaditaly answers, and I stiffen back up to try to make it stop, it's almost as if my muscles are trying to keep my bones in place and when they let go the bones hit nerves and shoot pain everywhere. I am only kind of aware or my muscles being tightened all day its a burning sensation that can make itself a screaming presence once in a while. Any ways my thoughts are getting all jumbled around, this was suppossed to help clear up my thinking and I'm confusing myself typing.
Basically I don't want to leave, I have healed in more ways than one since coming here, due largely in part to my sister's preggo wife who has selflessly listened while I have emotionally threw up about everything and has shown me how to be me again, n she loves me anyways, she thinks I'm nuts and confusing but she loves me and I know I could call her at four in the morning throwing up sick screaming crying drunk n she would answer. . . .I love you amanda, thank you for loving me. I'm afraid.....
Thursday, June 14, 2012
warning signs of mine enemy approaches
My worst enemy in having A.S the worst thing that this can and will do to me is to take my ability to walk, "sciatica" or a pinched nerve or whatever you want to call it. Every couple of months it flares it's ugly ass head, sometimes I do nothing over reach into a cabinet to get a cup or a bowl and BAM I'm on the floor. My husband has become accustomed to offering me his hand upon me siting or rising because if I"m able to grit my teeth n drag my offending appendage to a place to sit dow to spend time with him. . . .I can't get back up. For me being laid up on the couch is torture. I have a healthy mind I have the desire to scrub my house, play with my kids things people around me take for granted and it makes me sick sometimes. I see people raising their children to be independent at the age of eight or nine because they just want them to go away, I don't want to be that kind of mother, I'm an in your face do the right thing because I'm watching you kind of mom. I want my kids to know I'm there if they need me, even if they don't need me lol my daughter is gonna hate this in few years.
Any way the point of this rant is the muscle is tightening upon me rotating my hip and my hip is giving me what I like to call a fair "warning" it hurts when I walk every time I put my right leg down it's hurting enough for me to limp but not enough to totally make me lay down. It is telling me I have inflammation in there and telling me that it is thinking about making me a cripple for a couple weeks. I always get a little sick to my stomach when it does this, little hard to just wait and see if it is going to take my ability to walk. I pop OTC NSAIDS like crazy the mantra please please please in my head, who am I begging I'm not quite sure but surely someone has to be listening. I feel the lowest when I can move, when the pain of just standing on my legs can make me scream out loud in total agony regardless of who is around. I feel completely useless, pathetic, a waste of space.
So I"m off to family dollar this morning it's right across the road I have to refill my prednisone I have a pill n a half I"m about to take. Bottle of generic aleve and bottle of generic ibuprofen, most times this works. Sometimes it just "slips" anyways. This kind of pain is probably the most excruciating, the burning aching constant never go away u broke your ribs feelings is minor in comparison, this feels with every step like some invisible entity is inside n tearing the very things that hold your leg to your body apart, with every step clawing n riping and if any one could see inside me I"d be bleeding out and dying it hurts that bad.
I've had sciatica since I was in high school, I remember dropping to the floor in agony at like maybe thirteen. It was chalked up to "growing pains" I can tell you right now either of my children experience pain where they cannot move and a doctor says growing pains I"m likely to punch him, I can guarantee we are not leaving the hospital with that diagnosis you either help my baby or I'll sit in the waiting room screaming you got bed bugs. I genuinely cannot remember how many times I've been to the E.R. due to this horrid hip pain. Eighteen, nineteen, couple times a year with my husband being in the military they would x-ray me and here is the thing I may be laying there bawling and screaming in pain but if the x-ray doesn't show anything I'm faking it. Inflammation cannot be seen on an x-ray and if the technician doesn't know to be looking for it he can't even recognize that the inflammation is pushing my hip joints out of socket and pinching nerves etc. years and years of this me begging for help doctor's viewing x-rays and chalking me up to a junkie.Depending on the severity of the inflammation I can usually clear it to the point of walking in about a week. Stomach is screwed up for goodness knows how long cause NSAID's eat the lining of your stomach. At least I can walk, need a few good thoughts my way today, usual crap in my back and in my ribs, the leg is scaring the crap outta me. Hard to Stand Tall when I have no choice but to lay down.
Any way the point of this rant is the muscle is tightening upon me rotating my hip and my hip is giving me what I like to call a fair "warning" it hurts when I walk every time I put my right leg down it's hurting enough for me to limp but not enough to totally make me lay down. It is telling me I have inflammation in there and telling me that it is thinking about making me a cripple for a couple weeks. I always get a little sick to my stomach when it does this, little hard to just wait and see if it is going to take my ability to walk. I pop OTC NSAIDS like crazy the mantra please please please in my head, who am I begging I'm not quite sure but surely someone has to be listening. I feel the lowest when I can move, when the pain of just standing on my legs can make me scream out loud in total agony regardless of who is around. I feel completely useless, pathetic, a waste of space.
So I"m off to family dollar this morning it's right across the road I have to refill my prednisone I have a pill n a half I"m about to take. Bottle of generic aleve and bottle of generic ibuprofen, most times this works. Sometimes it just "slips" anyways. This kind of pain is probably the most excruciating, the burning aching constant never go away u broke your ribs feelings is minor in comparison, this feels with every step like some invisible entity is inside n tearing the very things that hold your leg to your body apart, with every step clawing n riping and if any one could see inside me I"d be bleeding out and dying it hurts that bad.
I've had sciatica since I was in high school, I remember dropping to the floor in agony at like maybe thirteen. It was chalked up to "growing pains" I can tell you right now either of my children experience pain where they cannot move and a doctor says growing pains I"m likely to punch him, I can guarantee we are not leaving the hospital with that diagnosis you either help my baby or I'll sit in the waiting room screaming you got bed bugs. I genuinely cannot remember how many times I've been to the E.R. due to this horrid hip pain. Eighteen, nineteen, couple times a year with my husband being in the military they would x-ray me and here is the thing I may be laying there bawling and screaming in pain but if the x-ray doesn't show anything I'm faking it. Inflammation cannot be seen on an x-ray and if the technician doesn't know to be looking for it he can't even recognize that the inflammation is pushing my hip joints out of socket and pinching nerves etc. years and years of this me begging for help doctor's viewing x-rays and chalking me up to a junkie.Depending on the severity of the inflammation I can usually clear it to the point of walking in about a week. Stomach is screwed up for goodness knows how long cause NSAID's eat the lining of your stomach. At least I can walk, need a few good thoughts my way today, usual crap in my back and in my ribs, the leg is scaring the crap outta me. Hard to Stand Tall when I have no choice but to lay down.
Tuesday, June 12, 2012
miss sleeping in
before this crap hit me I used to sleep in, I used to love to spend my mornings in bed with my kids watching cartoons. One snuggled on each side while we just held each other and watched TV. I miss it so much, my son still crawls in bed with me every morning and I still get some snuggles but I miss the connection we used to have. to lay there this morning holding him while he was sleeping almost made me cry, I feel like this crap is forcing me further and further away from my children. I realize it is all probably in my head and they still love me and need me like they did a year ago, but it still hurts my heart. I forced myself to lay there this morning and hold him till he fell back asleep all of about 20 minutes I think, it was a combination of sweet n torture. I haven't been sleeping sitting up, it just doesn't work when you don't have enough pillows and I feel guilty when I sleep in papaw's bed. . . .he needs it just as much as me. I'm totally unable to bend, I'm shuffling around this morning. I come downstairs slowly n hunched over and my pap is already awake his first words to me is "how you doing old lady?" Little ego shattering on the outside I already look like a hunched over old lady in the mornings.
I hate mornings, I have tried stretching and that makes me yell cause it hurts and that wakes up the kids which is not what I want. I need the mornings to adjust to the pain to give my meds at least a half hour to take the edge off, I want to be smiling with homemade pancakes etc. ready when my babies wake up to show them how much love I have in my heart for them. I know that bubby like to snuggle for like a half hour when he first gets up and sissy is starting to want snuggles too. Sounds sweet and easy right? Two four year olds snuggling n trying to get comfy two sets of elbows, two sets of knee's,two heads struggling to find just the right soft spot to snuggle into. One wrong move on their part or mine and it feels like knives slashing through my body, pain hurts, I don't like to hurt, my patience is almost zero for this kind of pain, but I miss my babies wanting to hold me.
You know the doctor's say if you ask for more pain pills your an addict. Just to take the edge off I'm an addict, the pills take it from excruciating to tolerable, I'm still in pain, I still hurt but I'm an addict because for that little bit of an edge I have more patience. I'm more willing to take a few jabs in my ribs so I can hold my babies. I want a cure so badly, I have went through so much in my life I fight the urge to whine a lot, I want to be seen as strong, I'm a hard worker, even with this crap on certain days I push myself till I'm sick. The tax I pay is literally so much pain I'm throwing up. Anyone else ever throw up because it hurt so much? It affects my entire body and for good measure it affect my emotional well being makes me question if I'm even a good person because of my short temper and no patience. I worry about not being the person I want to be, but I have found that there are people in my life who see through this outward shell that I have forced around myself to protect me, I have always seen crying as a weakness and I cry so much now you'd think I was constantly pregnant.
I started crying when I realized how lonely I was making myself. I got this diagnosis in Nov. I shut down to everyone. I've realized I went months without talking to another adult but my husband. and even him he would talk and I would blankly stare. he would ask how I felt and if there was anything he could do, n when I said no he changed the subject. I convinced myself he didn't care as long as dinner was on the table and his laundry done I was fulfilling his wish for a wifey. Looking back now that isn't true, he didn't know what to say or how to even begin to understand I shut him out, if he pushed it I would run away and hide and cry. I didn't let him in I didn't let anyone in, I couldn't that would mean I wasn't strong. I may need help but I'm still strong I'm still Standing Tall.
my advice to people reading this who have this disease, the hardest part is accepting it, is realizing that it doesn't have to be the lonely isolated shell the pain can force you into. Reach out talk about it, look your loved ones in the eyes and talk to them about your pain, tell them how much you need them to care, how much it means to be able to say I'm hurting here and here and here. It doesn't mean your whining, it means your telling the truth and sometimes when they understand where your hurting without asking they help you.You are loved Your needed and this disease cannot take away who you are, re adjust your life a little fight through it for the good times and rest give yourself a break. Love yourself, this disease is something you have not who you are.
signed A.S.S still hurting but still Standing Tall
I hate mornings, I have tried stretching and that makes me yell cause it hurts and that wakes up the kids which is not what I want. I need the mornings to adjust to the pain to give my meds at least a half hour to take the edge off, I want to be smiling with homemade pancakes etc. ready when my babies wake up to show them how much love I have in my heart for them. I know that bubby like to snuggle for like a half hour when he first gets up and sissy is starting to want snuggles too. Sounds sweet and easy right? Two four year olds snuggling n trying to get comfy two sets of elbows, two sets of knee's,two heads struggling to find just the right soft spot to snuggle into. One wrong move on their part or mine and it feels like knives slashing through my body, pain hurts, I don't like to hurt, my patience is almost zero for this kind of pain, but I miss my babies wanting to hold me.
You know the doctor's say if you ask for more pain pills your an addict. Just to take the edge off I'm an addict, the pills take it from excruciating to tolerable, I'm still in pain, I still hurt but I'm an addict because for that little bit of an edge I have more patience. I'm more willing to take a few jabs in my ribs so I can hold my babies. I want a cure so badly, I have went through so much in my life I fight the urge to whine a lot, I want to be seen as strong, I'm a hard worker, even with this crap on certain days I push myself till I'm sick. The tax I pay is literally so much pain I'm throwing up. Anyone else ever throw up because it hurt so much? It affects my entire body and for good measure it affect my emotional well being makes me question if I'm even a good person because of my short temper and no patience. I worry about not being the person I want to be, but I have found that there are people in my life who see through this outward shell that I have forced around myself to protect me, I have always seen crying as a weakness and I cry so much now you'd think I was constantly pregnant.
I started crying when I realized how lonely I was making myself. I got this diagnosis in Nov. I shut down to everyone. I've realized I went months without talking to another adult but my husband. and even him he would talk and I would blankly stare. he would ask how I felt and if there was anything he could do, n when I said no he changed the subject. I convinced myself he didn't care as long as dinner was on the table and his laundry done I was fulfilling his wish for a wifey. Looking back now that isn't true, he didn't know what to say or how to even begin to understand I shut him out, if he pushed it I would run away and hide and cry. I didn't let him in I didn't let anyone in, I couldn't that would mean I wasn't strong. I may need help but I'm still strong I'm still Standing Tall.
my advice to people reading this who have this disease, the hardest part is accepting it, is realizing that it doesn't have to be the lonely isolated shell the pain can force you into. Reach out talk about it, look your loved ones in the eyes and talk to them about your pain, tell them how much you need them to care, how much it means to be able to say I'm hurting here and here and here. It doesn't mean your whining, it means your telling the truth and sometimes when they understand where your hurting without asking they help you.You are loved Your needed and this disease cannot take away who you are, re adjust your life a little fight through it for the good times and rest give yourself a break. Love yourself, this disease is something you have not who you are.
signed A.S.S still hurting but still Standing Tall
Sunday, June 10, 2012
paying taxes
bubs birthday went relatively well had several cancellations and it almost broke my emotional control I bawled and freaked a Little then carried on. I think it went really well considering no one could bring him gifts because I cannot take them back on the train. bubbles and things like that and it made his day. I now have two four year old. Katie my daughter seems sometimes happy sometimes almost like she is mad about it because she wants to be older.
Yesterday I worked out in the yard took my pain pills and pushed myself HARD, and then took the kiddies to the little street fair and they had a total blast it was so fun watching them it was so fun to be a part of it. The only down side is that I took about two days worth of pain pills just to get through it. funny thing is that it didn't take it away it only reduced the burning to tolerable and the ribs . . .god whats going on in there? I'm worried that by the time I get back to the Doctor some kind of fusion has happened. It hurts, those words don't come close . . . .every day is the same thing if I'm doing something and concentrating elsewhere on the outside I look normal, I look like I can do the things I want to do. to see me working yesterday you would never know ne thing was wrong. . . . .just tolerable that's all the pills did. I woke up this morning in AGONY! it's almost like a vice tightened on my entire body, ribs, back, neck, shoulders , and the burning oh goodness it's enough to make me insane, I made coffee had breakfast and went back to bed. my Nana and my pap have taken care of my children all day.
I didn't get back up until two, wallowing around trying to escape this horrid feeling is one of the worst feeling in the world, if you set something on your toe and it hurts real bad all you gotta do is move your toe and the pain will stop. . . . . .NOTHING makes it stop, I have to do other things and find some other focus because siting still makes me almost crazy. I have to do other things because siting still brings all the pain into focus makes me very aware I cant breathe in and the burn in the middle of my back is so bad i swear there is a invisible demon sitting there with torch and a vice, fire first followed by crunching my bones together. maniacally laughing when I try to shift to get away.
I couldn't hide it today and my grandma tells me she is sorry, I don't want her to feel sorry for me. She thinks because i worked yesterday in the yard for her somehow this is her fault, In my explanation I have bad days all the time, most of the time I don't do a thing, I would much rather have this bad day because I worked for it than to just wake up to it. I have come to call it paying taxes, if I want to do something one day I gotta pay the taxes the next two or three. I wish I could say taking a vicodin would relieve it. I wish there was some stock in all the hubbub about pain pills I wish they worked for me like all these people the doctors are afraid of, but to be honest, my doctor could take them and I wouldn't really care they don't touch any thing, they don't make it stop. nothing does, this is the hell I am now faced with every day. The really awesome thing though is that I no longer care really, it isn't who I am. Some days I can pull my weight with the rest of them and some days I can't but I'm still awesome. I still fight through it, I still smile and try every day I try, I'm still worth it. This disease is the most painful thing i have ever felt, and its been a long journey for me to realize it doesn't have to define everything about me, even if my spine fuses totally I will not allow it to take the joy out of my days. watching my children smile and shriek with the band last night alone was worth every ounce of pain I feel today. SO FUCK YOU A.S. I'm still here and I'm still fighting and I'm still burning.
Yesterday I worked out in the yard took my pain pills and pushed myself HARD, and then took the kiddies to the little street fair and they had a total blast it was so fun watching them it was so fun to be a part of it. The only down side is that I took about two days worth of pain pills just to get through it. funny thing is that it didn't take it away it only reduced the burning to tolerable and the ribs . . .god whats going on in there? I'm worried that by the time I get back to the Doctor some kind of fusion has happened. It hurts, those words don't come close . . . .every day is the same thing if I'm doing something and concentrating elsewhere on the outside I look normal, I look like I can do the things I want to do. to see me working yesterday you would never know ne thing was wrong. . . . .just tolerable that's all the pills did. I woke up this morning in AGONY! it's almost like a vice tightened on my entire body, ribs, back, neck, shoulders , and the burning oh goodness it's enough to make me insane, I made coffee had breakfast and went back to bed. my Nana and my pap have taken care of my children all day.
I didn't get back up until two, wallowing around trying to escape this horrid feeling is one of the worst feeling in the world, if you set something on your toe and it hurts real bad all you gotta do is move your toe and the pain will stop. . . . . .NOTHING makes it stop, I have to do other things and find some other focus because siting still makes me almost crazy. I have to do other things because siting still brings all the pain into focus makes me very aware I cant breathe in and the burn in the middle of my back is so bad i swear there is a invisible demon sitting there with torch and a vice, fire first followed by crunching my bones together. maniacally laughing when I try to shift to get away.
I couldn't hide it today and my grandma tells me she is sorry, I don't want her to feel sorry for me. She thinks because i worked yesterday in the yard for her somehow this is her fault, In my explanation I have bad days all the time, most of the time I don't do a thing, I would much rather have this bad day because I worked for it than to just wake up to it. I have come to call it paying taxes, if I want to do something one day I gotta pay the taxes the next two or three. I wish I could say taking a vicodin would relieve it. I wish there was some stock in all the hubbub about pain pills I wish they worked for me like all these people the doctors are afraid of, but to be honest, my doctor could take them and I wouldn't really care they don't touch any thing, they don't make it stop. nothing does, this is the hell I am now faced with every day. The really awesome thing though is that I no longer care really, it isn't who I am. Some days I can pull my weight with the rest of them and some days I can't but I'm still awesome. I still fight through it, I still smile and try every day I try, I'm still worth it. This disease is the most painful thing i have ever felt, and its been a long journey for me to realize it doesn't have to define everything about me, even if my spine fuses totally I will not allow it to take the joy out of my days. watching my children smile and shriek with the band last night alone was worth every ounce of pain I feel today. SO FUCK YOU A.S. I'm still here and I'm still fighting and I'm still burning.
Friday, June 8, 2012
train tickets
yesterday did not turn out as such a good day, I'm only supposed to be here till Monday but when train tickets were checked online they have went up four hundred dollars if I want to leave tomorrow.looks like I'm here for another two weeks and I buy the tickets today instead of waiting so they don't have the chance to shot to a thousand dollars. it only cost me five hundred to get here n they want me to pay nine hundred to get back.I truly wish that was the only thing that made yesterday suck, my family has such deep ugly secrets funny enough surrounding me. . . .. every couple of years I try to pretend I'm normal, I try to make it all okay. I want somewhere to belong, somewhere I feel totally safe just being me and I keep hoping that this time will be the time, and it never is.
It doesn't help my disease the more agitated I am the later I stay up the later I stay up the harder I sack out, I went to bed at like one thirty, when I sack out hard I don't wake up to shift, I don't think I woke up even once last night to shift, I must have laid completely in one spot and woke up at seven thirty so laying still for six hours makes me almost a zombie, I'm miserable my ribcage is hurting like my ribs are broken and I cannot expand it past shallow sleep breathing. My back feels like there is a red hot poker shoved through my spinal column and for good measure curved into my neck I cant look up im sorta hanging my head down, thankfully I have a laptop or blogging wouldn't be an option right now.There is a pounding at the base of my skull and I dont normally have headaches, slouched over and slightly, just in general pissed off. My entire family needs an exorcism.
Today is my son's fourth birthday, four years ago today I gave birth to a beautiful little man who everyday makes me feel like the sun is just a little brighter. I never knew how big a hole I had in my life until I had my babies. . ... there isn't anything in this world I wouldn't do to give them a normal life. Part of the depression that I struggle with is due to feeling inadequate, today should be his day, I'm up earlier than he is to try n give my meds time to work. I get so completely disappointed and disgusted with myself when I can't do the things for them that make a good mother in my mind. A good mother would be able to run and play with her son. I can tickle him on the couch. A good mother would swing him high through the air and catch him and tell him today is your birthday, little man your one amazing kid. . . . I can barely pick him up.
I have to push that kind of thinking away or I'll get disgusted before i even start trying today, I may not be everything even I think a good mother should be but I'm gonna be better cause I'm still trying through all this pain, I am still determined to see his face light up and hear his laughter and though I may have to sit down to hold him, I will make sure he doesn't miss out. I have to cut this one short I'm gonna have to hot shower it to loosen up, been awake about an hour and to look at me you'd think I was the hunchback my neck is even stiff this morning.
the dreadfully, awfu,l persistent burn is gonna be bad today. . . . . . .. .I don't pray very often but please give me the strength to ignore it, give me the concentration to put it out of my mind and not be angry. . . .. .I think I'll put myself in time out if I can't shake it off. That would break my heart in two but I will not ruin his day because I'm so grouchy and CANNOT get away from this constant burning ache, I doubt any one can blame me, let me follow them around n drip burning plastic down their backs n see if they can still smile for cake n ice cream.
I will not complain I will smile and I will fake it and if all goes well and it doesn't top my tolerance level noone will even know. I cannot wait for the day for a cure, or to even start enbrel which I have now based so much hope in I'm afraid for it to fail. To not have to prepare like this just for a birthday, sounds almost like a fantasy to me, and I'm still newly diagnosed since november 2011 I have come to realize this isn't "sleeping wrong" and going to go away. This is me. . . . .. . ...sometimes I really don't like me. . . . . . .signed A.S.S.
It doesn't help my disease the more agitated I am the later I stay up the later I stay up the harder I sack out, I went to bed at like one thirty, when I sack out hard I don't wake up to shift, I don't think I woke up even once last night to shift, I must have laid completely in one spot and woke up at seven thirty so laying still for six hours makes me almost a zombie, I'm miserable my ribcage is hurting like my ribs are broken and I cannot expand it past shallow sleep breathing. My back feels like there is a red hot poker shoved through my spinal column and for good measure curved into my neck I cant look up im sorta hanging my head down, thankfully I have a laptop or blogging wouldn't be an option right now.There is a pounding at the base of my skull and I dont normally have headaches, slouched over and slightly, just in general pissed off. My entire family needs an exorcism.
Today is my son's fourth birthday, four years ago today I gave birth to a beautiful little man who everyday makes me feel like the sun is just a little brighter. I never knew how big a hole I had in my life until I had my babies. . ... there isn't anything in this world I wouldn't do to give them a normal life. Part of the depression that I struggle with is due to feeling inadequate, today should be his day, I'm up earlier than he is to try n give my meds time to work. I get so completely disappointed and disgusted with myself when I can't do the things for them that make a good mother in my mind. A good mother would be able to run and play with her son. I can tickle him on the couch. A good mother would swing him high through the air and catch him and tell him today is your birthday, little man your one amazing kid. . . . I can barely pick him up.
I have to push that kind of thinking away or I'll get disgusted before i even start trying today, I may not be everything even I think a good mother should be but I'm gonna be better cause I'm still trying through all this pain, I am still determined to see his face light up and hear his laughter and though I may have to sit down to hold him, I will make sure he doesn't miss out. I have to cut this one short I'm gonna have to hot shower it to loosen up, been awake about an hour and to look at me you'd think I was the hunchback my neck is even stiff this morning.
the dreadfully, awfu,l persistent burn is gonna be bad today. . . . . . .. .I don't pray very often but please give me the strength to ignore it, give me the concentration to put it out of my mind and not be angry. . . .. .I think I'll put myself in time out if I can't shake it off. That would break my heart in two but I will not ruin his day because I'm so grouchy and CANNOT get away from this constant burning ache, I doubt any one can blame me, let me follow them around n drip burning plastic down their backs n see if they can still smile for cake n ice cream.
I will not complain I will smile and I will fake it and if all goes well and it doesn't top my tolerance level noone will even know. I cannot wait for the day for a cure, or to even start enbrel which I have now based so much hope in I'm afraid for it to fail. To not have to prepare like this just for a birthday, sounds almost like a fantasy to me, and I'm still newly diagnosed since november 2011 I have come to realize this isn't "sleeping wrong" and going to go away. This is me. . . . .. . ...sometimes I really don't like me. . . . . . .signed A.S.S.
Thursday, June 7, 2012
ignorance in the E.R.
I called my rhuematologist yesterday because the pain from my shoulder was geting so bad it was making me sick like throwing up sick and it started radiating across my chest, I was worried about it and any As'er understands that our lives come with a certain amount of pain and over time our pain tolerance slowly increases. this was topping my tolerance and so i called and he reccomended I go to an urgernt care or an emergency room. I tried argueing with him that I didnt want to go, on average doctor's have no idea what this disease is or even what it does. Me being from a tiny town in ohio have spent a good majority of my life here and being looked down upon as a pill seeker, druggie,worthles and making my pain up in my head. I was dismissed here, I was ridiculed here I"v had doctor's look me in the face and tell me they didn't know what was wrong. Basically I wanted to chew my own arm off rather than go, I wanted the rhuemy to call in something magicall over the phone so I could steriod the crap outa myself and call it good.. . . . . He dissagreed and I drove myself the forty plus minutes to a tiny little E.R.
I was checked in pretty quickly leaving my Rhuemy's information at the front desk per his instructions for me to be evaluated. . . . almost movie star status as everyone kept asking why I was coming in and once explained I was vivisitng from oregon . . . . wow all the way out there? why r u here? how long you staying? . . . . . .smal town gossip and excitement sure I made the water cooler conversation. I was at first put into a room with windows and a little T.V. and talked to two triage nurse's who asked me how to spell "IT" and what my symptoms at the moment were etc. I was still relatively hopeful from this point as I felt combined with being from so far away with fax number for my doc maybe I would be treated with some respect. I waited for about ten minutes and this little nurse walks in and says" I'm sorry about the confusion but I really need to move you we have a gentleman waiting who really needs the bed." . . . . . .and I didn't? I was led to a "consultation room" it was literally a closet with three chairs in it, no windows no T.V. nothing a room with chairs that at a larger hospital would have contained linens.
I was crushed and pulled my armor of a fake ass smile and cheerful outward appearance down quickly. I sat there for the better part of an hour stewing and texting, trying to alleviate some of my anxiety and frustration, I did not want to be there had argued to not go in I already knew how people looked at me and already was scared that I was going to have to "push through it" I was scared because i have really never had the inflammation spread so quickly or be in my chest, still relatively new to all that having "IT" is going to entail for me I've been reading all kinds of scary things and although my attitude while reading all the scary things has been well that's not gonna be me, mine has to be mild in comparison right?. . . . . .The tightness across my chest had me rethinking my cocky attitude.
Doctor finally walks in and meets my eye's have found that eye contact sometimes says what I won't say with my mouth which at this point combined with my fake smile and slightly flushed cheeks I think she read loud and clear this humiliated me and I didn't want to be there. She asked me my symptoms and asked me if it was new. . . . . .then asked me what to do?!. . . . . this is new for me. . . .i didn't know what to say. . . .I wouldn't be here if i knew what to do. Out she went to find the other E.R. doctor another woman who sat down and re went through my symptoms and asked me what I would like for them to do for me. . . .well hmmmmm, I suggested a steroid shot and something for the throwing up I don't like throwing up and she smiled and Voila! mysterious case of the invisible disease solved. She listened to my heart n to my lungs and I warned her I breathe shallowly she made me force it, and I guess my heart sped up with the pain from it so for good measure she ordered x-rays and an E.K.G.
I kind of scoffed at the x-rays been getting them since I was about 12 or 13 and nothing had ever showed on them to show how much pain I was in even with me hoping with everything i had and thinking in my head this time has got to be the time they can finally "SEE" what I feel. Drowning disappointment as I heard the words "nothing unusual" they don't believe you if they cant see it. I like a good girl put on my gown and waited while the x-ray tech went through his motions, me smiling and making small talk until he asked me to raise my arm and looked surprised when i said give me a minute and I had to physche myself up for the pain I knew was gonna shoot through me. Tells me good job and gets the next one and I mention I'm a little dizzy, and he says "really?" I wish i could explain to him that I smile and fake it everyday just because you can't see the redness I'm sure consumes my insides doesn't mean it's not there, just because I make eye contact and refuse to back down doesn't mean I'm not inwardly exhausted hiding the pain you can't see. I pride myself on looking "normal" and I will not break that pride for a stranger, I will not lower myself in front of someone I barely know so maybe this time I will be believed.
I also had an EKG which showed my heart speeding and slowing with the pain but not enough to be "alarming" and to follow up with my Rheumy, just knowing that soon I will be back in his office describing this horrid visit to him gives me a strength. I don't need these backwoods yardmonkeys with their "we don't give narcotics without picture ID" literally posted everywhere, I don't have to prove myself even one more time because I've already found someone who believes me, the relief and weight off my chest just thinking about that is amazing, I have only had about three visits with him and I LOVE him, my husband might be a little jealous if he knew but how can i ever explain . . . .I've been trying to find someone to take me serious longer than I've even known my husband existed.Five hours after getting to this tiny E.R. the nurse came in to release me with a script for percs and something for nasuea, I politely asked for my steroid shot as I know the pain pills don't touch squat and the inflammation is not treated with pain pills. he looked surprised as he went in search of the doctor. Take ur measly 12 pills n stick them up ur butt just give me the shot, I'v never exerianced my rib cage being this tight, prednisone 20 mg's a day n OTC naproxen wasn't touching it. give me the steroids. . . . . .as I kid you said steroids I pictured arnold Swartchnegger. . . .funny they don't do that for me but they can make me be able to breathe. . . .I'll take that.
I was checked in pretty quickly leaving my Rhuemy's information at the front desk per his instructions for me to be evaluated. . . . almost movie star status as everyone kept asking why I was coming in and once explained I was vivisitng from oregon . . . . wow all the way out there? why r u here? how long you staying? . . . . . .smal town gossip and excitement sure I made the water cooler conversation. I was at first put into a room with windows and a little T.V. and talked to two triage nurse's who asked me how to spell "IT" and what my symptoms at the moment were etc. I was still relatively hopeful from this point as I felt combined with being from so far away with fax number for my doc maybe I would be treated with some respect. I waited for about ten minutes and this little nurse walks in and says" I'm sorry about the confusion but I really need to move you we have a gentleman waiting who really needs the bed." . . . . . .and I didn't? I was led to a "consultation room" it was literally a closet with three chairs in it, no windows no T.V. nothing a room with chairs that at a larger hospital would have contained linens.
I was crushed and pulled my armor of a fake ass smile and cheerful outward appearance down quickly. I sat there for the better part of an hour stewing and texting, trying to alleviate some of my anxiety and frustration, I did not want to be there had argued to not go in I already knew how people looked at me and already was scared that I was going to have to "push through it" I was scared because i have really never had the inflammation spread so quickly or be in my chest, still relatively new to all that having "IT" is going to entail for me I've been reading all kinds of scary things and although my attitude while reading all the scary things has been well that's not gonna be me, mine has to be mild in comparison right?. . . . . .The tightness across my chest had me rethinking my cocky attitude.
Doctor finally walks in and meets my eye's have found that eye contact sometimes says what I won't say with my mouth which at this point combined with my fake smile and slightly flushed cheeks I think she read loud and clear this humiliated me and I didn't want to be there. She asked me my symptoms and asked me if it was new. . . . . .then asked me what to do?!. . . . . this is new for me. . . .i didn't know what to say. . . .I wouldn't be here if i knew what to do. Out she went to find the other E.R. doctor another woman who sat down and re went through my symptoms and asked me what I would like for them to do for me. . . .well hmmmmm, I suggested a steroid shot and something for the throwing up I don't like throwing up and she smiled and Voila! mysterious case of the invisible disease solved. She listened to my heart n to my lungs and I warned her I breathe shallowly she made me force it, and I guess my heart sped up with the pain from it so for good measure she ordered x-rays and an E.K.G.
I kind of scoffed at the x-rays been getting them since I was about 12 or 13 and nothing had ever showed on them to show how much pain I was in even with me hoping with everything i had and thinking in my head this time has got to be the time they can finally "SEE" what I feel. Drowning disappointment as I heard the words "nothing unusual" they don't believe you if they cant see it. I like a good girl put on my gown and waited while the x-ray tech went through his motions, me smiling and making small talk until he asked me to raise my arm and looked surprised when i said give me a minute and I had to physche myself up for the pain I knew was gonna shoot through me. Tells me good job and gets the next one and I mention I'm a little dizzy, and he says "really?" I wish i could explain to him that I smile and fake it everyday just because you can't see the redness I'm sure consumes my insides doesn't mean it's not there, just because I make eye contact and refuse to back down doesn't mean I'm not inwardly exhausted hiding the pain you can't see. I pride myself on looking "normal" and I will not break that pride for a stranger, I will not lower myself in front of someone I barely know so maybe this time I will be believed.
I also had an EKG which showed my heart speeding and slowing with the pain but not enough to be "alarming" and to follow up with my Rheumy, just knowing that soon I will be back in his office describing this horrid visit to him gives me a strength. I don't need these backwoods yardmonkeys with their "we don't give narcotics without picture ID" literally posted everywhere, I don't have to prove myself even one more time because I've already found someone who believes me, the relief and weight off my chest just thinking about that is amazing, I have only had about three visits with him and I LOVE him, my husband might be a little jealous if he knew but how can i ever explain . . . .I've been trying to find someone to take me serious longer than I've even known my husband existed.Five hours after getting to this tiny E.R. the nurse came in to release me with a script for percs and something for nasuea, I politely asked for my steroid shot as I know the pain pills don't touch squat and the inflammation is not treated with pain pills. he looked surprised as he went in search of the doctor. Take ur measly 12 pills n stick them up ur butt just give me the shot, I'v never exerianced my rib cage being this tight, prednisone 20 mg's a day n OTC naproxen wasn't touching it. give me the steroids. . . . . .as I kid you said steroids I pictured arnold Swartchnegger. . . .funny they don't do that for me but they can make me be able to breathe. . . .I'll take that.
Monday, June 4, 2012
normal for a day
Yesterday I spent a good four hours painting a deck with my sister sister in law my two kids and . . . . .. what do you call my sister wife's mom, brother, and dad? we will just go with in-laws. The stretching and reaching was absolutely miserable for me, it hurt to the point I ended up throwing up but only right as we were walking away, I almost made it. .would have preferred to have managed it without anyone knowing. . .my little sis saw me. I thought I was out of eyesight. I asked her to please not draw attention to it, I would have been SO embarrassed if her mom had seen/shown concern. Someone without this disease would ask why in the world would you willingly put yourself through that? Answer. . . .I hurt EVERYDAY I don't get to actually be a functioning member of society everyday. I am aware it's going to hurt and I'm pretty good at masking it when I really want to do something and this I really wanted to do. I'm good at hiding the pain and "faking" it, I fake it everyday, sitting, walking, standing, talking, even going potty, sometimes I kinda go to sit and then fall the rest of the way to the toilet cause the pain is so sharp going slowly feels like I'm trying to rip a tendon out of my booty with a pair of rusty pliers.
Why don't I want anyone to know? I don't look sick, I am twenty seven I'm young and I have two small children. Lots of reasons. . .. I don't want anyone to think I'm incapable of raising my kids, it infuriates me, I've seen so so many doctor's and listened to them doubt me and assume I'm a "druggie" if this is a professionals opinion then the public at large is going to assume the same and they don't know me well enough to see it for their selves. I hate to be thought of as weak even worse have someone tell me to push through it, they have no idea. My pride in who I am will not allow everyone to see these weaknesses. Under this disease I'm still me, I still see the world through my own eyes.
I've met her family before and they are great people and they love my kids and I love them, I don't know if they are even aware that I have this and while I'm not ashamed of it by any means to be able to blend in for a day and show my force through labor makes me feel accomplished.I wanted to make an awesome impression, I'm one of those people when I know I'm being watched I push harder. I'm proud that I didn't outwardly show any pain. Proud to be able to force through it to accomplish something. I'm the type of person growing up that if I stubbed my toe I would break whatever I stubbed my toe on. I HATE being in pain, there isn't anything I can break to make it pay, no one did this to me, no event caused it to happen.
So yesterday although was a major pain day was also an accomplishment for me, I feel productive and although it isn't something I'm capable of everyday that's okay. . . . .The deck looks amazing AND major bonus it's five year paint and who knows maybe by the next time it comes up someone has thought of an amazing cure that will make this eighty year old body I happen to be trapped in turn back into the nubile twenty seven year old body it is supposed to be.
Whining Update. . . .Woke up in pain slept like crap forgot my prednisone before bed so my ribs feel pretty bad, deep ache in my hips, also starting to think my body hates my right side. . . .my right eye went blind a couple years ago, my right leg is the one that gets "sciatica" the most and now my right shoulder. . . . . . .time for my morning dose of prednisone which is almost like speed followed by a muscle relaxer pain pill combo that makes me feel like I've been awake for days at sea. swallowed with coffee you would think that they would meet somewhere in the middle. . . .trying it different this morning muscle relaxer first, give it an hour n take the prednisone see if it makes it easier for me to function quicker and maybe without a nap.
Signed . . .ASS
Why don't I want anyone to know? I don't look sick, I am twenty seven I'm young and I have two small children. Lots of reasons. . .. I don't want anyone to think I'm incapable of raising my kids, it infuriates me, I've seen so so many doctor's and listened to them doubt me and assume I'm a "druggie" if this is a professionals opinion then the public at large is going to assume the same and they don't know me well enough to see it for their selves. I hate to be thought of as weak even worse have someone tell me to push through it, they have no idea. My pride in who I am will not allow everyone to see these weaknesses. Under this disease I'm still me, I still see the world through my own eyes.
I've met her family before and they are great people and they love my kids and I love them, I don't know if they are even aware that I have this and while I'm not ashamed of it by any means to be able to blend in for a day and show my force through labor makes me feel accomplished.I wanted to make an awesome impression, I'm one of those people when I know I'm being watched I push harder. I'm proud that I didn't outwardly show any pain. Proud to be able to force through it to accomplish something. I'm the type of person growing up that if I stubbed my toe I would break whatever I stubbed my toe on. I HATE being in pain, there isn't anything I can break to make it pay, no one did this to me, no event caused it to happen.
So yesterday although was a major pain day was also an accomplishment for me, I feel productive and although it isn't something I'm capable of everyday that's okay. . . . .The deck looks amazing AND major bonus it's five year paint and who knows maybe by the next time it comes up someone has thought of an amazing cure that will make this eighty year old body I happen to be trapped in turn back into the nubile twenty seven year old body it is supposed to be.
Whining Update. . . .Woke up in pain slept like crap forgot my prednisone before bed so my ribs feel pretty bad, deep ache in my hips, also starting to think my body hates my right side. . . .my right eye went blind a couple years ago, my right leg is the one that gets "sciatica" the most and now my right shoulder. . . . . . .time for my morning dose of prednisone which is almost like speed followed by a muscle relaxer pain pill combo that makes me feel like I've been awake for days at sea. swallowed with coffee you would think that they would meet somewhere in the middle. . . .trying it different this morning muscle relaxer first, give it an hour n take the prednisone see if it makes it easier for me to function quicker and maybe without a nap.
Signed . . .ASS
Sunday, June 3, 2012
Annnd I'm nervous
woke up with my back hurting but mild compared to the horrid pain I'm feeling in my shoulder, I'm actually getting pretty scared. Breathing deeply makes it hurt so I'm thinking it might be serious might not. Could only be that the inflammation that is my constant companion has now decided to set up shop in my shoulder.I am going to enjoy my day just have to get used to this new feeling and manage to ignore it or find some way that makes it okay enough that i can ignore it. Please please please just be some sort of strained muscle, or inflammation please don't let it be something i have to get used to long term. Yet another blow to my "I got this Whooped" ego though cause even through the nsaid's and the steroids it's still hurting. I almost dropped my son's cereal bowl this morning. Fighting the why me response which only leads to a huge pity party and me slumping inwards cause i cannot stand to even hear myself whine so I wouldn't put it on my loved one's. No one wants to constantly hear someone else whining.
wish that it would just magically go away, things go so well and then boom i cant hardly think past some sort of restrictive pain that makes me mad. I hate being in pain, I hate not being able to move the way I want to, do the things that I want to. To just be able to enjoy my day and focus on the people and things going on in my life without my focus being drawn away by a knife of pain shooting through some part of my body without injury mind without any warning of hey your doing something that is gonna hurt tomorrow. I just wake up with it, I just go to bed with it.
Today is the last day at my little Sissy and I want to enjoy my time with them, to watch them in their loving and happy environment reminds me of young me n hubby. They are full of a positive energy and I have eat it up, coming to their house alone has revived in me a hope for life. One I could never truly explain without being a sobbing mess. I hold this little ray of sunshine in my heart for them that I feel needs protected, I already would protect them from any outside force. I would post specifics but they aren't necessary. I feel safe here I feel like I'm allowed to not only have opinions and loudly express myself, I'm almost shocked every time there is specific concern on my well being. I think my husband getting used to me having this has forgotten that I'm still human. Forgotten that sometimes I need him to show genuine concern instead of "how do i fix it?" I can't be fixed but it soothes my very soul to know that someone genuinely cares.
I'm not afraid anymore to let all of me show. . . .well I take that back I still am scared that the insecure flawed and hurting me is enough to send people running, I am still scared to find out someone I love considers me weak, I have to learn to have a thicker skin I think but in baring myself it kind of leaves me wide open and vulnerable, the emotional side of all of this definitely does not just come from my disease, I have an abusive background that I may put on here at some point but only in passing maybe not really sure. This disease has made me draw so far up into myself and surround myself in a blanket of anger to prevent myself from being hurt. I will no longer hide it's been almost a year. . . . .I'm tired of being alone tired of being lonely, it feels good to be loved for me accepted for my flaws and loved anyways.
update. .. . .have i ever mentioned the drag of muscle relaxers? I take a prednisone n a muscle relaxer have hyper energy for all of an hr and then a crash so hard i have to drag myself around eyelids drooping feeling like i have weights tied to my limbs and if i could just sleep for ten mins it would be better. Except that I have coffee and inside my head is awake enough to think about everything it could possibly think as soon as I close my eyes. my shoulder feels better still hurts but range of movement is increased . . . . .while in the shower I considered sleeping in the tub but fear of drowning made me refrain.
wish that it would just magically go away, things go so well and then boom i cant hardly think past some sort of restrictive pain that makes me mad. I hate being in pain, I hate not being able to move the way I want to, do the things that I want to. To just be able to enjoy my day and focus on the people and things going on in my life without my focus being drawn away by a knife of pain shooting through some part of my body without injury mind without any warning of hey your doing something that is gonna hurt tomorrow. I just wake up with it, I just go to bed with it.
Today is the last day at my little Sissy and I want to enjoy my time with them, to watch them in their loving and happy environment reminds me of young me n hubby. They are full of a positive energy and I have eat it up, coming to their house alone has revived in me a hope for life. One I could never truly explain without being a sobbing mess. I hold this little ray of sunshine in my heart for them that I feel needs protected, I already would protect them from any outside force. I would post specifics but they aren't necessary. I feel safe here I feel like I'm allowed to not only have opinions and loudly express myself, I'm almost shocked every time there is specific concern on my well being. I think my husband getting used to me having this has forgotten that I'm still human. Forgotten that sometimes I need him to show genuine concern instead of "how do i fix it?" I can't be fixed but it soothes my very soul to know that someone genuinely cares.
I'm not afraid anymore to let all of me show. . . .well I take that back I still am scared that the insecure flawed and hurting me is enough to send people running, I am still scared to find out someone I love considers me weak, I have to learn to have a thicker skin I think but in baring myself it kind of leaves me wide open and vulnerable, the emotional side of all of this definitely does not just come from my disease, I have an abusive background that I may put on here at some point but only in passing maybe not really sure. This disease has made me draw so far up into myself and surround myself in a blanket of anger to prevent myself from being hurt. I will no longer hide it's been almost a year. . . . .I'm tired of being alone tired of being lonely, it feels good to be loved for me accepted for my flaws and loved anyways.
update. .. . .have i ever mentioned the drag of muscle relaxers? I take a prednisone n a muscle relaxer have hyper energy for all of an hr and then a crash so hard i have to drag myself around eyelids drooping feeling like i have weights tied to my limbs and if i could just sleep for ten mins it would be better. Except that I have coffee and inside my head is awake enough to think about everything it could possibly think as soon as I close my eyes. my shoulder feels better still hurts but range of movement is increased . . . . .while in the shower I considered sleeping in the tub but fear of drowning made me refrain.
Saturday, June 2, 2012
Focus on the Positive
feeling pretty good this morning, went to bed at roughly one a.m. and woke up a cple times to readjust back on top of my stack of pillows, and woke up at nine thirty. Only feels like a slight sprain in my ribs, and my neck, and my right shoulder. The shoulder is new, I'v ben feeling the pressure building under it for a cpl days now and my range of movement in it is definatly shrinking. I ran out of the sulfasazene about a week ago and didn't bother to refill it. Totally my choice as I'm on vacation and I have enbrel awaiting me at my home, when i first started taking the sulfazene I could tell a diferance but havent felt any sort of differance in months and it costs thirty dollers to refill, felt like it was eating through my stomach any ways. yesterday i went and got OTC naproxen and stomach pills and preceeded to take six of them throughout the course of the day. I can fel the range of movement is improved already.
I self treated for years without even realizing what i was doing, when I met my husband i was sixteen and already on a daily dose of more aleve gerneric naproxen or ibuprofen than i could count and funny enough it worked as a birth control that I didnt even know about until this past year.Every time i went to a doctor's apt. i told them of my daily ingestion of about 800 mg aleve and 800 mgs of ibuprofen and not once did they say anything not even when i began seing a fertility specialist and considering invitro. He was in the navy and IVF would have cost me five thousand out of pocket. We were discussing it and then moved to a different station and sadly I just began to believe i was infertile.
Looking back now I think it was probably a good thing we were both young and stupid but still I suffered a great deal of depresion from this. I think I'm the burnout on docters I spend hours on the computer trying to find differant ideas or diest or weird supplements that may help without having to go to a docter. my medical record is literally so big it is in about three differant folders and probably about 20 to 30 differant doctors and or specialists telling me they just didnt know or that there wasn't any proof of damage bla bla bla. I have no trust in doctors they have no idea what they r doing, and once i walk out of their waiting room they dont have another thought about me so if I'm going to beat this or at least find some semblence of life with it, I need to arm myself with knowledge.
Two days on the naproxen and I'm feeling better waaay better than with the sulfazene, noticeable improvement in movement as im siting stil i only attempt to re shift about every five to ten instead of every two that I was yesterday. . . . . . my shoulder feels almost like i spent the entire day yesterday throwing a softball as hard as i could. . . .starting to worry me a little curious if the damage is going to be important in the amount of time it wil take me to get to my docter.
I'v been visiting with my family for about a month now and my quality of life has tripled, I'm pretty sure it has to do with the expansive support system i have here. I have been able to get closer to my little sister, I have found an amazing friend and confidant in her wife, I'm pouring my guts out more now and attempting to re place trust. . . .I'v been emotionally shut-off for so long it is a journey. . . .This disease has made me bottle into myself more than I can express my own opinion of myself was so low I felt that my family deserved more than me and now I'm back I got this even if enbrel doesnt work I'm an amazing fricking person. This pain is only a tiny fraction of who I am and what I'm capable of. my heart is filled with joy and hope and happiness.
I self treated for years without even realizing what i was doing, when I met my husband i was sixteen and already on a daily dose of more aleve gerneric naproxen or ibuprofen than i could count and funny enough it worked as a birth control that I didnt even know about until this past year.Every time i went to a doctor's apt. i told them of my daily ingestion of about 800 mg aleve and 800 mgs of ibuprofen and not once did they say anything not even when i began seing a fertility specialist and considering invitro. He was in the navy and IVF would have cost me five thousand out of pocket. We were discussing it and then moved to a different station and sadly I just began to believe i was infertile.
Looking back now I think it was probably a good thing we were both young and stupid but still I suffered a great deal of depresion from this. I think I'm the burnout on docters I spend hours on the computer trying to find differant ideas or diest or weird supplements that may help without having to go to a docter. my medical record is literally so big it is in about three differant folders and probably about 20 to 30 differant doctors and or specialists telling me they just didnt know or that there wasn't any proof of damage bla bla bla. I have no trust in doctors they have no idea what they r doing, and once i walk out of their waiting room they dont have another thought about me so if I'm going to beat this or at least find some semblence of life with it, I need to arm myself with knowledge.
Two days on the naproxen and I'm feeling better waaay better than with the sulfazene, noticeable improvement in movement as im siting stil i only attempt to re shift about every five to ten instead of every two that I was yesterday. . . . . . my shoulder feels almost like i spent the entire day yesterday throwing a softball as hard as i could. . . .starting to worry me a little curious if the damage is going to be important in the amount of time it wil take me to get to my docter.
I'v been visiting with my family for about a month now and my quality of life has tripled, I'm pretty sure it has to do with the expansive support system i have here. I have been able to get closer to my little sister, I have found an amazing friend and confidant in her wife, I'm pouring my guts out more now and attempting to re place trust. . . .I'v been emotionally shut-off for so long it is a journey. . . .This disease has made me bottle into myself more than I can express my own opinion of myself was so low I felt that my family deserved more than me and now I'm back I got this even if enbrel doesnt work I'm an amazing fricking person. This pain is only a tiny fraction of who I am and what I'm capable of. my heart is filled with joy and hope and happiness.
Friday, June 1, 2012
I will no longer suffer in silence
My morning so far consisted of waking up with the lower two ribs on both sides feeling like they were pushing inwards, and broken in the middle. I woke up like three times last night I think and am now experiencing a brain fog. I'm stiff and hunched over cause of the burning/pressure somewhere in the middle of my back which keeps telling me to move this way or maybe hunch a little deeper and Voila! somehow I would manage to feel comfortable sitting still.
My kids have been little hellions this morning fighting amongst each other and my almost four yr old son poking the cat with a butter knife and the cat swats him and sends bub into a complete meltdown as somehow it never occurred to him that the cat once hurt would fight back and me arguing that he deserved it. It's rainy outside which somehow makes me feel even more tired. I always have this slightly confused feeling as though I'm supposed to be doing something productive, I'm supposed to be showing my children some new and exciting thing where they learn something amazing. I simply do not have the energy, I think I have had this disease ALOT longer than I've been diagnosed and I know it goes into remission I cannot wait for it too, I think about the old me skinny in a pair of jogging shorts with an I-pod jammed on her head running n singing the day away, kinda makes me sleepy just thinking about it lol.
I wish I could shake off the groggy feeling already had my coffee and my morning handful of pills that don't help, (why do I even take them?) I wonder if having an energy drink on top of everything else might actually eat through my stomach at some point? This flare came on full force after my miscarriage in Oct. so on top of one of the most heart breaking things I've ever lived through lets make the pain go on FOREVER! my life is on hold, and it really feels that way like some force outside of myself is holding me to this spot in burning misery. I think I've developed a split personality because of this, I know when I get up from this chair i will go in the living room with my kids and allow them to snuggle/jump on me and even though it hurts beyond words i will smile and think about how beautiful they really are. I will quietly burn and focus on something else, I will ignore the burn for the rest of the day and it's not just for everyone else that I do this, I do it for myself because if I only focused on the burning ache and the fact that i cannot get away from it no matter what, I would run screaming down the street begging for someone to shoot me.
Jeania Smith and I'm an ASS (Ankylosing Spondylitis Suferer)
My kids have been little hellions this morning fighting amongst each other and my almost four yr old son poking the cat with a butter knife and the cat swats him and sends bub into a complete meltdown as somehow it never occurred to him that the cat once hurt would fight back and me arguing that he deserved it. It's rainy outside which somehow makes me feel even more tired. I always have this slightly confused feeling as though I'm supposed to be doing something productive, I'm supposed to be showing my children some new and exciting thing where they learn something amazing. I simply do not have the energy, I think I have had this disease ALOT longer than I've been diagnosed and I know it goes into remission I cannot wait for it too, I think about the old me skinny in a pair of jogging shorts with an I-pod jammed on her head running n singing the day away, kinda makes me sleepy just thinking about it lol.
I wish I could shake off the groggy feeling already had my coffee and my morning handful of pills that don't help, (why do I even take them?) I wonder if having an energy drink on top of everything else might actually eat through my stomach at some point? This flare came on full force after my miscarriage in Oct. so on top of one of the most heart breaking things I've ever lived through lets make the pain go on FOREVER! my life is on hold, and it really feels that way like some force outside of myself is holding me to this spot in burning misery. I think I've developed a split personality because of this, I know when I get up from this chair i will go in the living room with my kids and allow them to snuggle/jump on me and even though it hurts beyond words i will smile and think about how beautiful they really are. I will quietly burn and focus on something else, I will ignore the burn for the rest of the day and it's not just for everyone else that I do this, I do it for myself because if I only focused on the burning ache and the fact that i cannot get away from it no matter what, I would run screaming down the street begging for someone to shoot me.
Jeania Smith and I'm an ASS (Ankylosing Spondylitis Suferer)
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