Spoonie Surviving Health Crisis
Donation protected
SURVIVING MY CHRONIC ILLNESS
I've gone back and forth for weeks now praying for wisdom and courage to do this. You know, to put it out there. All of it.... As terrified as I am to write this though and to expose the truth of what's been going on (while feeling completely naked and super vulnerable btw) I have reached a point where I can no longer allow my life to spiral out of control for fear of of everyone else's reaction to the truth. I can no longer let fear and shame or pride or whatever prevent me from addressing this crisis and doing something about it. Not without destroying myself or hurting my family along the way. I can no longer pretend to be well for the sake of my loved one's emotions or for sake of appearances. At least not without further jeopardizing my wellbeing and the quality of life for my family...my children especially. So It's time to put on my big girl panties and fight through "the feels" to do this. Plus, Surviving this crazy roller coaster ride that is my life has been anything but easy anyway so why not throw some fuel on the fire and watch something incredible come from the ashes right?!
It's time to be honest because I can no longer hide the fact that I simply cannot do this on my own... and once you're done taking it all in I can only pray that you will love me the same, if not more, and that you will support me and embrace me as I power through and survive the rough patch. I hope that you can understand or relate on some level with my daily battle and have compassion. I hope you will not judge me or be disappointed in me for not speaking out sooner. I want you to experience a glimpse of my life so you can see how hard I fought and continue to fight. I hope that in me being brave enough to do this it helps anyone going through anything similar to face and address their own demons and kick their asses too ;)
....So let's go ahead and be real. My health has always been a topic of conversation. For as long as I can remember I can honestly say I have felt "unwell" in varying degrees and severity. I have done a damn good job at hiding my hardships and tribulations for the most part and Honestly how incredibly sad is that. To do it all on your own. However as ill as I've been before (and man I've been sickkkk) I've never been this sick, definitely not for this long and not this bad. It's really forced me into a position to deal with reality and it's left me no choice but to address it all head on. No more half ass. Time for the full Monty. Ahh. But you see these kids, my 2 beautiful miracles, were the biggest desire of my heart and the biggest blessing God has granted me. Many still don't even know that Infertility robbed me of my joy more than any other obstacle in my life. For years I carried that without those close to me ever even knowing what I was battling and that I was slowly dying inside every day. I've had a life that would break many. That's just what it is. I wasnt made for cookie cutter. I wouldn't change a second of it though and I've always embraced it but I do wish I'd been honest and open earlier and not handled it all on my own causing so much damage to myself along the way.
During my recent health decline I am learning more every day about my conditions and about myself. Learning why I feel the things I do and the way I do and coming to terms with my new reality and recognizing now just how long I've been sick and what's connected. slowly we as a family are changing our lives around accordingly. So here it is; The ugly truth. I am chronically ill. Severely, painfully, uncomfortably, desperately ill. Most days I'm not ok. Most days I don't know how I even manage to blink because even that is hard. I no longer work nor am able to even attempt to fake like I can do so. Therefore I no longer bring in income. I no longer can provide monetarily what I'm accustomed to. I also can no longer do "normal" things the way I used to (or more accurately, pretended to be able to do) or live a "normal" life the way we've been taught to. Fact is, i am a 31 year old mom of 2 toddlers who is fighting a battle that looks different Every single day. Living with an invisible illness that brings it's own struggles daily and manisfests itself in cruel and unusual ways. Everything hurts! Always! My joints are stiff and swollen, my muscles vibrate. Yes vibrate! And they're so tight that every movement makes me beg they don't snap. My body cracks and twitches and i have spasms everywhere. I am painfully sensitive to things like weather, temperature, even clothes or materials. I can't walk at all some days and yet I can sorta attempt my chicken leg dance on others. I cannot lift or hold my children anymore. When I do the physical consequences are brutal. I mean dang I can't even sign my name lately let alone fill out paper work! These hands have no sensation so burns are 2nd nature along with tingling and numbness. I drop things because my hands go weak. My mind and my body are weirdly disconnected somehow and that in and of itself is freaking crazy! I don't sleep, weird things are unbearable like when my hair hurts, I have nerve damage, migraines from hell, my memory is foggy af sometimes, oh and did I mention the burning sensation that I can only describe as acid exploding from the inside out like invisible lava. I mean come on I'm quite the ball of fun. My speech slurs some days like my mind is too fast for my lips to process. I have no balance any more and the dizziness constantly puts me on my ass. Every day I feel like i got hit be a big semi truck and then fell down 30 flights of jagged concrete steps. And that's just being vague.
The painscale is a joke to me as I cannot relate to a normal amount of pain. Majority of people would have broken if they walked in my shoes, Crashed and hit rock bottom. I mean just imagine giving birth daily ladies (but only as far as pain and minus the beautiful reward) then you can almost understand the pain level I live with on a regular. Ouch. I currently see a team of doctors several times a week who try to make things tolerable but Most of them don't even know what to do with me. THINGS ARE HARD. To say the least. With accepting my reality comes changes. BIG CHANGES. Ones that require those big girl panties I formerly mentioned because this crap is scary man! I'm In this transition right now from what my mind thinks I am and should be capable of and what my body shows that I'm actually capable of. It's really a strange place to be. It's quite hard going from being an independent woman to one that has to rely on help. A lot of help. FOR EVERYTHING. And right now I welcome any and all help offered. From copays to groceries and medicines, from hugs and distractions to help with research. I'll take it all
Despite it all and No matter how bad the days may be though they all bring little victories. Speaking of those, getting my handicap sticker was a huge one. So let's address it... yes, I have a handicap sticker. I no longer drive unless necessary and I never go out alone. I require a walker or some sort of walking assistance. The scooter is my bestie because I mean hell just breathing is hard, Literally! (Yes, really) And the thing is that's ok. That's my life. I'm only telling you so you are aware. So you know and understand. So it makes sense when there's sadness behind my big smile. Or when you see me struggle to do something simple like open a water bottle. I tell you so you are prepared before you see me next if it's been a while. Every day I will become more accepting of what my body can and cannot do and I'll continue accepting my limitations the best I can. There may be a lot of pity parties included but Don't judge too harshly. After all i'm just a person... A small, quirky, free spirit of a woman trying to make sense of it all and get back to my passions and aspirations. Part of which brings me to the point of this long message (sorry not sorry reading is good for your brain haha) and finally creating this gofundme account and dealing with this like a boss
Physically I know there's no cure. I can live with that. I just can't live with it the way I have been trying to. Trying to mask the pain and fight the inability to work because of the need for income. Financially I'm drowning. Losing my ability to bring in income until disability comes through adds a magnanimous amount of stress on top of every thing else. There are too many doctor appointments and testing and a slew of medical things like medicines And hospitals and shower seats and walkers, therapies etc that are quite honestly are so expensive that it's easier to put them off. Bill's don't stop when you're sick people and responsibility is only greater with every passing day. To make the decision to stop and take care of myself the correct and complete way requires money. And FAITH. I can no longer afford to not address my illness. But financially I can't afford to address it either. That's bottom line. The good old Catch 22.
I need Help with daily activities now. To brush my hair and pick up things and carry things, to get up when I can't. I really need a mobility service dog. Working on it. But again everything requires money. Groceries, medicines, doctor visits, treatment etc. If I can't work, (I can finally accept that) especially with the doctors so adamant about it, that doesn't change the monetary need right now while things fall into place. Medical disability is no walk in the park. It's a walking by faith and not by sight and believing that it'll all work out and be worth it in the end until you make it to the other end and get it approved. It's not an easy process and anyone who's gone through this can vouch for what i'm saying. Months of no income yet million appointments and forms and things required, all while expenses pile up. I'm not asking for a free ride or pity party here, i'm asking you to help me survive and provide until I can once again do it on my own so I can simultaneously take care of my health AND of my life. These medical expenses on top of all other expenses are no joke and make it impossible to catch up much less take care of my health the way I need to and get the help I need. It's not possible for me to keep this to myself anymore AND get better AND keep it together mentally without breaking or giving up. If I plan on trying to give myself a true chance and make it better across the board then it's time to rip off the bandaid and do what I've never done and try what I haven't tried. I need help. No longer will I hide behind excuses. Instead i'll come honest and raw and put it all out there and on the line. Instead i'll change slowly all the things I can at least semi control things like what and how i eat or what tools to use for things like reaching or whatever when I can't. Adjustments. Many many adjustments. And compromises. And pep talks! Lots and lots of pep talks. All I ask is you don't cast the first stone without first reflecting on what you'd do if you were me.
I need help desperately to get by for now and any little help goes a long way. Every small gesture is one less thing for me to figure out and worry about on top of everything else i have going on. If you know me you know that I am always there to provide help and never the one to ask for it. That's why doing this is so hard. I'm doing this for the babies. My babies that I struggled so long and hard for. I also have to give praise to my husband for taking care of me and the kids these last few years. In every sense. He's carried my burden for far too long (as have our parents) and i can't wait until the time comes to let them rest. My husband, The man who has stood by my side while I kicked and screamed and believed when I longer hoped. The one who's been there while some dreams have come true and while others plummeted to the ground. He's held me up and remained by my side even when I've wanted to smack him upside the head. Haha. Seriously though, My family deserves A mom, a wife, a woman, who can stand up to all adversity and give them the world despite it. A mom who may be sick but one who is happy. I do this for them because without them I don't think I could be strong enough to handle it all. If it was just me I'd say the hell with it and crawl into a little ball. That's not an option though. And I'll be damned if I don't fix this and become a better mom and person along the way.
Ultimately Thank you for reading this incredibly long rant that might not be eloquent and professional and for loving me despite it. For your endless support and hugs and tears and laughs. You help me survive. ♥️ on the note of survival btw...To make this transition apply to my life a little easier we have been implementing the spoon theory in my house because well I'm a spoonie. (Go look it up.) I'm asking my family and friends to give me some spoons. Literally folks. Old used ones, shiny new ones, dirty ones, stained ones, quirky ones. I'll take them all. Seriously, GIMEE ALL THE SPOONS! They represent something special to me now. I am a spoonie And on particularly rough days I'd like the reminder that I have support, that my family has support. I love you all and right now we need you. And ya know, occasional reminders of how kick-ass I am wouldn't hurt either
Shout out to all my Angels. (I won't get into names or details you know who you are) The ones God has touched to help me stay afloat so far and the ones who nudge me in the right direction, love me on this journey, and accept me good, bad and ugly. My army. Thank you for all the prayers and intercession on my behalf. All the fasting and night's spent crying out to God for mercy. I know I'll get through this and I will make you all proud. It's time to believe and reach for the stars to make dreams happen. I just need to survive this rough chapter and I really need you to do it. Gratitude is an understatement for the love and blessings that's radiated my way when I've needed it most. Seriously, you've all helped me carry the weight of the world on my shoulders and although it hasn't always been so graceful it's been beautiful in its own right as you've learned to dance around my limitations. Thank you to all my loved ones, my warriors, my fighters, who have picked up my broken pieces and willed them back together. To my closest friends who's hearts I've broken in letting them in and showing them how bad it's gotten. To those who battle with me daily and understand in a way that I wish they didn't have to (like my kick-ass BM) Thank you to those who continue to believe in me when I stopped believing in myself. You are the true MVPs.
I know it's a lot to take in. Hence why it's taken so much to put it all out there. I won't isolate this time or any more. I won't fake being well or being ok. I'm sorry if this makes you sad, uncomfortable, etc. It makes me feel all those things telling you too and making it public. It scares me to be hurt anymore than I have in my life and have my weaknesses be used against me maliciously or whatever other million things and thoughts and fears that hold me back...BUT You must be willing to do what's never been done to get the results you've always wanted. So there it is. The whole raw ugly sad truth. Take it and process it all. Then do what you feel in your heart. Whether that's love me harder or leave me alone is now on you. I will love you regardless and appreciate your role in my life. If you can help monetarily please do. Please Help me help myself and improve my life. Help me with medical expenses so I can take care of the rest. And if you can't help with money but you can offer help with things like the service dog and applying, healthy recipes and homemade things like using alternative things like essential oils or whatever in making this house more mobile friendly. Anything. I'm all about it. That's why I need you. In any way you can help you alleviate some of my anxieties and stress.
PS please feel free to share and pass this forward. Let people know about me and let them see how hard this is but that it's possible. Thank you for reading. Thank you for donating. Thank you for understanding. Thank you for praying. One day i'll look back and wonder why I didn't do it sooner. For now survival mode is in full effect and I hope you come along for the ride
♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️
I've gone back and forth for weeks now praying for wisdom and courage to do this. You know, to put it out there. All of it.... As terrified as I am to write this though and to expose the truth of what's been going on (while feeling completely naked and super vulnerable btw) I have reached a point where I can no longer allow my life to spiral out of control for fear of of everyone else's reaction to the truth. I can no longer let fear and shame or pride or whatever prevent me from addressing this crisis and doing something about it. Not without destroying myself or hurting my family along the way. I can no longer pretend to be well for the sake of my loved one's emotions or for sake of appearances. At least not without further jeopardizing my wellbeing and the quality of life for my family...my children especially. So It's time to put on my big girl panties and fight through "the feels" to do this. Plus, Surviving this crazy roller coaster ride that is my life has been anything but easy anyway so why not throw some fuel on the fire and watch something incredible come from the ashes right?!
It's time to be honest because I can no longer hide the fact that I simply cannot do this on my own... and once you're done taking it all in I can only pray that you will love me the same, if not more, and that you will support me and embrace me as I power through and survive the rough patch. I hope that you can understand or relate on some level with my daily battle and have compassion. I hope you will not judge me or be disappointed in me for not speaking out sooner. I want you to experience a glimpse of my life so you can see how hard I fought and continue to fight. I hope that in me being brave enough to do this it helps anyone going through anything similar to face and address their own demons and kick their asses too ;)
....So let's go ahead and be real. My health has always been a topic of conversation. For as long as I can remember I can honestly say I have felt "unwell" in varying degrees and severity. I have done a damn good job at hiding my hardships and tribulations for the most part and Honestly how incredibly sad is that. To do it all on your own. However as ill as I've been before (and man I've been sickkkk) I've never been this sick, definitely not for this long and not this bad. It's really forced me into a position to deal with reality and it's left me no choice but to address it all head on. No more half ass. Time for the full Monty. Ahh. But you see these kids, my 2 beautiful miracles, were the biggest desire of my heart and the biggest blessing God has granted me. Many still don't even know that Infertility robbed me of my joy more than any other obstacle in my life. For years I carried that without those close to me ever even knowing what I was battling and that I was slowly dying inside every day. I've had a life that would break many. That's just what it is. I wasnt made for cookie cutter. I wouldn't change a second of it though and I've always embraced it but I do wish I'd been honest and open earlier and not handled it all on my own causing so much damage to myself along the way.
During my recent health decline I am learning more every day about my conditions and about myself. Learning why I feel the things I do and the way I do and coming to terms with my new reality and recognizing now just how long I've been sick and what's connected. slowly we as a family are changing our lives around accordingly. So here it is; The ugly truth. I am chronically ill. Severely, painfully, uncomfortably, desperately ill. Most days I'm not ok. Most days I don't know how I even manage to blink because even that is hard. I no longer work nor am able to even attempt to fake like I can do so. Therefore I no longer bring in income. I no longer can provide monetarily what I'm accustomed to. I also can no longer do "normal" things the way I used to (or more accurately, pretended to be able to do) or live a "normal" life the way we've been taught to. Fact is, i am a 31 year old mom of 2 toddlers who is fighting a battle that looks different Every single day. Living with an invisible illness that brings it's own struggles daily and manisfests itself in cruel and unusual ways. Everything hurts! Always! My joints are stiff and swollen, my muscles vibrate. Yes vibrate! And they're so tight that every movement makes me beg they don't snap. My body cracks and twitches and i have spasms everywhere. I am painfully sensitive to things like weather, temperature, even clothes or materials. I can't walk at all some days and yet I can sorta attempt my chicken leg dance on others. I cannot lift or hold my children anymore. When I do the physical consequences are brutal. I mean dang I can't even sign my name lately let alone fill out paper work! These hands have no sensation so burns are 2nd nature along with tingling and numbness. I drop things because my hands go weak. My mind and my body are weirdly disconnected somehow and that in and of itself is freaking crazy! I don't sleep, weird things are unbearable like when my hair hurts, I have nerve damage, migraines from hell, my memory is foggy af sometimes, oh and did I mention the burning sensation that I can only describe as acid exploding from the inside out like invisible lava. I mean come on I'm quite the ball of fun. My speech slurs some days like my mind is too fast for my lips to process. I have no balance any more and the dizziness constantly puts me on my ass. Every day I feel like i got hit be a big semi truck and then fell down 30 flights of jagged concrete steps. And that's just being vague.
The painscale is a joke to me as I cannot relate to a normal amount of pain. Majority of people would have broken if they walked in my shoes, Crashed and hit rock bottom. I mean just imagine giving birth daily ladies (but only as far as pain and minus the beautiful reward) then you can almost understand the pain level I live with on a regular. Ouch. I currently see a team of doctors several times a week who try to make things tolerable but Most of them don't even know what to do with me. THINGS ARE HARD. To say the least. With accepting my reality comes changes. BIG CHANGES. Ones that require those big girl panties I formerly mentioned because this crap is scary man! I'm In this transition right now from what my mind thinks I am and should be capable of and what my body shows that I'm actually capable of. It's really a strange place to be. It's quite hard going from being an independent woman to one that has to rely on help. A lot of help. FOR EVERYTHING. And right now I welcome any and all help offered. From copays to groceries and medicines, from hugs and distractions to help with research. I'll take it all
Despite it all and No matter how bad the days may be though they all bring little victories. Speaking of those, getting my handicap sticker was a huge one. So let's address it... yes, I have a handicap sticker. I no longer drive unless necessary and I never go out alone. I require a walker or some sort of walking assistance. The scooter is my bestie because I mean hell just breathing is hard, Literally! (Yes, really) And the thing is that's ok. That's my life. I'm only telling you so you are aware. So you know and understand. So it makes sense when there's sadness behind my big smile. Or when you see me struggle to do something simple like open a water bottle. I tell you so you are prepared before you see me next if it's been a while. Every day I will become more accepting of what my body can and cannot do and I'll continue accepting my limitations the best I can. There may be a lot of pity parties included but Don't judge too harshly. After all i'm just a person... A small, quirky, free spirit of a woman trying to make sense of it all and get back to my passions and aspirations. Part of which brings me to the point of this long message (sorry not sorry reading is good for your brain haha) and finally creating this gofundme account and dealing with this like a boss
Physically I know there's no cure. I can live with that. I just can't live with it the way I have been trying to. Trying to mask the pain and fight the inability to work because of the need for income. Financially I'm drowning. Losing my ability to bring in income until disability comes through adds a magnanimous amount of stress on top of every thing else. There are too many doctor appointments and testing and a slew of medical things like medicines And hospitals and shower seats and walkers, therapies etc that are quite honestly are so expensive that it's easier to put them off. Bill's don't stop when you're sick people and responsibility is only greater with every passing day. To make the decision to stop and take care of myself the correct and complete way requires money. And FAITH. I can no longer afford to not address my illness. But financially I can't afford to address it either. That's bottom line. The good old Catch 22.
I need Help with daily activities now. To brush my hair and pick up things and carry things, to get up when I can't. I really need a mobility service dog. Working on it. But again everything requires money. Groceries, medicines, doctor visits, treatment etc. If I can't work, (I can finally accept that) especially with the doctors so adamant about it, that doesn't change the monetary need right now while things fall into place. Medical disability is no walk in the park. It's a walking by faith and not by sight and believing that it'll all work out and be worth it in the end until you make it to the other end and get it approved. It's not an easy process and anyone who's gone through this can vouch for what i'm saying. Months of no income yet million appointments and forms and things required, all while expenses pile up. I'm not asking for a free ride or pity party here, i'm asking you to help me survive and provide until I can once again do it on my own so I can simultaneously take care of my health AND of my life. These medical expenses on top of all other expenses are no joke and make it impossible to catch up much less take care of my health the way I need to and get the help I need. It's not possible for me to keep this to myself anymore AND get better AND keep it together mentally without breaking or giving up. If I plan on trying to give myself a true chance and make it better across the board then it's time to rip off the bandaid and do what I've never done and try what I haven't tried. I need help. No longer will I hide behind excuses. Instead i'll come honest and raw and put it all out there and on the line. Instead i'll change slowly all the things I can at least semi control things like what and how i eat or what tools to use for things like reaching or whatever when I can't. Adjustments. Many many adjustments. And compromises. And pep talks! Lots and lots of pep talks. All I ask is you don't cast the first stone without first reflecting on what you'd do if you were me.
I need help desperately to get by for now and any little help goes a long way. Every small gesture is one less thing for me to figure out and worry about on top of everything else i have going on. If you know me you know that I am always there to provide help and never the one to ask for it. That's why doing this is so hard. I'm doing this for the babies. My babies that I struggled so long and hard for. I also have to give praise to my husband for taking care of me and the kids these last few years. In every sense. He's carried my burden for far too long (as have our parents) and i can't wait until the time comes to let them rest. My husband, The man who has stood by my side while I kicked and screamed and believed when I longer hoped. The one who's been there while some dreams have come true and while others plummeted to the ground. He's held me up and remained by my side even when I've wanted to smack him upside the head. Haha. Seriously though, My family deserves A mom, a wife, a woman, who can stand up to all adversity and give them the world despite it. A mom who may be sick but one who is happy. I do this for them because without them I don't think I could be strong enough to handle it all. If it was just me I'd say the hell with it and crawl into a little ball. That's not an option though. And I'll be damned if I don't fix this and become a better mom and person along the way.
Ultimately Thank you for reading this incredibly long rant that might not be eloquent and professional and for loving me despite it. For your endless support and hugs and tears and laughs. You help me survive. ♥️ on the note of survival btw...To make this transition apply to my life a little easier we have been implementing the spoon theory in my house because well I'm a spoonie. (Go look it up.) I'm asking my family and friends to give me some spoons. Literally folks. Old used ones, shiny new ones, dirty ones, stained ones, quirky ones. I'll take them all. Seriously, GIMEE ALL THE SPOONS! They represent something special to me now. I am a spoonie And on particularly rough days I'd like the reminder that I have support, that my family has support. I love you all and right now we need you. And ya know, occasional reminders of how kick-ass I am wouldn't hurt either
Shout out to all my Angels. (I won't get into names or details you know who you are) The ones God has touched to help me stay afloat so far and the ones who nudge me in the right direction, love me on this journey, and accept me good, bad and ugly. My army. Thank you for all the prayers and intercession on my behalf. All the fasting and night's spent crying out to God for mercy. I know I'll get through this and I will make you all proud. It's time to believe and reach for the stars to make dreams happen. I just need to survive this rough chapter and I really need you to do it. Gratitude is an understatement for the love and blessings that's radiated my way when I've needed it most. Seriously, you've all helped me carry the weight of the world on my shoulders and although it hasn't always been so graceful it's been beautiful in its own right as you've learned to dance around my limitations. Thank you to all my loved ones, my warriors, my fighters, who have picked up my broken pieces and willed them back together. To my closest friends who's hearts I've broken in letting them in and showing them how bad it's gotten. To those who battle with me daily and understand in a way that I wish they didn't have to (like my kick-ass BM) Thank you to those who continue to believe in me when I stopped believing in myself. You are the true MVPs.
I know it's a lot to take in. Hence why it's taken so much to put it all out there. I won't isolate this time or any more. I won't fake being well or being ok. I'm sorry if this makes you sad, uncomfortable, etc. It makes me feel all those things telling you too and making it public. It scares me to be hurt anymore than I have in my life and have my weaknesses be used against me maliciously or whatever other million things and thoughts and fears that hold me back...BUT You must be willing to do what's never been done to get the results you've always wanted. So there it is. The whole raw ugly sad truth. Take it and process it all. Then do what you feel in your heart. Whether that's love me harder or leave me alone is now on you. I will love you regardless and appreciate your role in my life. If you can help monetarily please do. Please Help me help myself and improve my life. Help me with medical expenses so I can take care of the rest. And if you can't help with money but you can offer help with things like the service dog and applying, healthy recipes and homemade things like using alternative things like essential oils or whatever in making this house more mobile friendly. Anything. I'm all about it. That's why I need you. In any way you can help you alleviate some of my anxieties and stress.
PS please feel free to share and pass this forward. Let people know about me and let them see how hard this is but that it's possible. Thank you for reading. Thank you for donating. Thank you for understanding. Thank you for praying. One day i'll look back and wonder why I didn't do it sooner. For now survival mode is in full effect and I hope you come along for the ride
♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️
Organizer
Stephanie Graziano
Organizer
North Arlington, NJ