.:Terminal:.
I have been quiet for quite some time, I'm sure you've noticed. A lot has happened these past 2 months. Many things that take many hours and days to process. You know the stages; denial, anger, bargaining, depression and acceptance. I am stuck in a tornado between anger and depression. I am not in denial, I have accepted the fact that I am sick and I will never be cured. I have fought so many doctors to help me that I've become worn out and sick of fighting. I am baffled by the amount of so called "medical professionals" who know nothing about my illnesses and if they do its very small. I have a rare and complicated case of sever gastroparisis with diverticulitis both of those are paralysis of the GI track, having those two combined with my two heart conditions is just a recipe for failure. I have been off of my TPN feeds for a month and a half now, testing my body to see what it does or does not do. Being on TPN I felt no different other than "feed sick" now let me explain what that means; it is a feeling of extreme fullness and that I have to throw up non stop all day, even the thought of food makes me gag, so tell me, how does one gain weight? They tried every combo they could in my formula bags even dropping me down to only 700 calories a night (not even close to what one needs) and still I was getting sick and hives everywhere. Being on TPN progressed my gastroparisis to a level that my dietitian was hoping I never would have reached so quickly. Let the anger settle in now.
I go to my GI and explain everything to him (he's new to my "team") he's reading my charts, I think he's listening but soon find out he's just like the others. He tells me, "I am like the mop of your care, everyone has done what they can and I am just here to mop up the mess. I would put you on this pill or that one but you've done those already. I would try this test or that test but you've had them done so many times. You've seen a lot of doctors and it seems we all come to the conclusion that we can do nothing for you aside from management." With tears streaming down my face I ask him one final question, "Do you do the procedure where a port gets put into my small bowel that will help with the pressure" his response, "I didn't even know that was something that was done" I replied "its called a cecostomy tube, my dietitian told me about it." He looked at me dumbfounded and actually goggled it right in front of me. I hate that I know more than my doctors but they will never do what I need, if I could find someone who would do the tests I need and the procedures, I know I could at least up my quality of life. At this moment I knew I would never see this doctor again. As I walked out with tear stained face I was yet again defeated. Filled with anger, doubt, sadness and defeat. I freaking HATE doctors! I called my dietitian and told her what Dr. B had told me, she apologized and referred me to Dr. F (now I've been referred to him more than once but never looked into it because he is out of network and Lord knows I have created enough bills to last 3 lifetimes) but he's supposed to be the "best in the state" and he is the only GI doctor who does this procedure and actually knows Gastroparisis. So maybe I should call him and give him a shot.
I had a scope scheduled to stretch my throat again (I have to every 6 months do to my dysphasia) and I love my surgeon, he seems to be the only one on my team who truly wants me better and to better my quality of life. Side note; I get a quick nap so that's always a bonus in my books. I talked to him about Dr. F and Dr. B as he apologized and wished he knew how to help me he did agree Dr F would have the answer if anything and he'd be happy to do any procedure that needed to be done. After that it was time to sleep, I always smile and laugh at this because the nurses only get a dose ready for my weight.. Ya not gonna sleep honey. They always ask Dr M if he's sure on my doses as he and I smile and he replies yes. "See you in 20 minutes hummingbird". Same results, full of inflammation (not air that's a point to remember) and dilated me to an 18 again, YES I can eat food without choking for the next 6-8 weeks this is a win for me.
After a couple weeks of fighting myself on calling Dr F to set an appointment I finally call; mostly because my dietitian wouldn't let up and I continuously feel like crap. Freddy is certainly pissed I can feed his fire orally again. I have his phone number typed into my phone "Just hit call, it's just setting an appointment you've done this hundreds of times. But what if he's not available, what if he says no? he won't say no, I have 4 doctors telling me he's the one. What if he doesn't believe me? What if he's just like all the others? JUST CALL, I can't. I'm afraid, frozen because of everything that's happened to me. Push the button Tamarra, what do you have to loose? FINE stop screaming at me, I'll call!" I close my eyes take to many deep breaths, heart pounding so hard it's hard to hear, hard to breath. I'm so hot.. "Oh hi, I'm sorry, I am calling to make and appointment with Dr. F" "Okay, do you have a referral and what are we seeing you for?" Gosh I HATE this part! So, I go over everything and the why I'm being told to see him. His nurse puts me on hold, comes back and says "Dr. F will call you once he reviews your charts" UGH! That is NEVER good. Defeat. He called me back, I was very much in shock. "Hello Ms Armstrong, I'm Dr F. I have reviewed your files and would also like to hear from you what you're feeling and going through and then I will tell you what I can do." So after me explaining yet again everything that's happening and why I was being referred to him I was not ready for what I heard next, tears came before he was even done. "Tamarra, I cannot help you, you are not a candidate for a cecostomy because you have no air in your GI track it's all inflammation. You were informed correctly that I do know quite a bit about Gastroparisis but not at the level of yours. I recommend you call UCLA they may be able to do more for you." I know he can hear me crying out of sheer frustration. "I am sorry, I wish I had the answers for you but you are to complicated of a case for many" Thanks doc. And with that the phone call ended. I cannot be the only person who has this! Why am I constantly told "no" and "you're to complicated" "I can't help you" It's almost like Freddy laughs at me with this news, "haha you still cannot get rid of me" he's mocking me I can feel it. Stupid Stupid Stupid. Step two: I have to tell my family, I have to see their faces fall as I tell them yet again I cannot be helped and this doctor is just like the others.
In the mix of all of these emotions my disability attorney calls and says "Good news, the state now considers you disabled and recognizes you are terminal. Congrats. Let me know if I can do anything else for you." Congrats? I'm terminally disabled and that deserves a congratulations? Now call me stupid but you congratulate on success not on defeat. I'm 36, I am to young to be on this list, but to sick to work anymore. Freddy wins again.
I have kept my job and work once to twice a week, I love my job. They know about my illnesses and work well with me. Plus everyone needs an out or you'll swallow yourself in depression. Working while sick adds a whole new level of stress and fears that cause extreme anxiety (guess that's where the disabilities come into play). My mind scares me; what if I need to go to the bathroom, what if my heart freaks out, what if Freddy shows his face to a point I cannot focus on my job due to the pain, can I handle all of the pregnancy comments. I am very respected at my job and appreciated, I love the looks of relief on my employee's face when I show up "oh good it's you" "we've missed you" "how are you feeling" "we know everything will run smoothly because you're here" all those bring smiles to my face and a purpose. I've worked at my job for 21 years and absolutely love it. Sure there are bad days but as long as the good out does that bad it's totally worth it. I'm exhausted after a shift but I wouldn't trade it. I am a seasoned Dispatcher and Security Sgt. for an amusement park, a place I have worked at for half of my life. I know my park like I know my own house. I have had to cut my availability way back, I've had to come to terms that I cannot control my body temp therefore that makes me unable to work outside in the elements. This was my first year I have not been on the park, mingling, doing my security checks, interacting with guests and employee's, watching family's experience the park together, watching eyes light up when they're finally tall enough to ride the ride they couldn't last year. Hearing laughter helps my days. Seeing happiness makes me smile. Doing my job makes me happy. Dispatching brings me a different type of happiness, I love that just as much. I love that even with being sick I can multi-task better than most, I can triage without being physically there. I always know where my employee's are as well as remember all the calls I've taken and logged. I do not let my job and responsibilities go to my head; I believe even with my promotions I have maintained a strong work ethic and a straight head. This season I had to let my body win or I would have suffered a thousand times more. At the end of every season many ask "Are you coming back next year?" "Only time will tell" I'd love to say yes but I cannot.
At the end of October it was time to do my annual doctor check up with my pcp (primary care physician) as I waited my turn I always wonder what people think, why are they there, what are they thinking of me? After vitals and weight I update the MA on "changes and meds" and wait. Dr S comes in with her head low but tried to have an upbeat "Hello", I give her an A for effort. I tell her what Dr F said as she stares at me in disbelief "My husband just had dinner with him, maybe I can have him put in a word for you". She's tried so many times to get me with people she honestly thinks and believes will help me. She told me to look into the Mayo clinic and was shocked when I told her I did and still have the letter of denial with the reason "We do not take patients if we know we cannot cure them, nor do we believe in giving a false hope" defeat. As she refills my meds and has now ordered compression socks (I'm retaining fluid now) I leave her office knowing I see my GI the next day and doubting her husband will have much of a say so.
Going into my GI appointment I knew he would tell me he cannot help, what I wasn't prepared for was what he put in my chart "Patients symptoms have worsened and nothing seems to be helping. There are no further treatments for her, she is terminal and it is recommended she write a medical directive." He hands me my "appointment summary" and I walk out of his office in a very dark haze. My mind oddly blank, my heart extremely sad. I know I'm sick but I didn't want to read it. To have it on paper makes it feel more real. No treatment plans? No course of action? I am not curable? Theirs nothing anyone can do? But I am 36, I have a ton of years left, right? Right, as long as I am stubborn and keep myself in control I have awhile. I have things to do, places to go, goals to reach. Terminal is a crappy word but it's one I'm now labeled. "Congrats Tamarra the state recognizes you as terminal"
I go to my GI and explain everything to him (he's new to my "team") he's reading my charts, I think he's listening but soon find out he's just like the others. He tells me, "I am like the mop of your care, everyone has done what they can and I am just here to mop up the mess. I would put you on this pill or that one but you've done those already. I would try this test or that test but you've had them done so many times. You've seen a lot of doctors and it seems we all come to the conclusion that we can do nothing for you aside from management." With tears streaming down my face I ask him one final question, "Do you do the procedure where a port gets put into my small bowel that will help with the pressure" his response, "I didn't even know that was something that was done" I replied "its called a cecostomy tube, my dietitian told me about it." He looked at me dumbfounded and actually goggled it right in front of me. I hate that I know more than my doctors but they will never do what I need, if I could find someone who would do the tests I need and the procedures, I know I could at least up my quality of life. At this moment I knew I would never see this doctor again. As I walked out with tear stained face I was yet again defeated. Filled with anger, doubt, sadness and defeat. I freaking HATE doctors! I called my dietitian and told her what Dr. B had told me, she apologized and referred me to Dr. F (now I've been referred to him more than once but never looked into it because he is out of network and Lord knows I have created enough bills to last 3 lifetimes) but he's supposed to be the "best in the state" and he is the only GI doctor who does this procedure and actually knows Gastroparisis. So maybe I should call him and give him a shot.
I had a scope scheduled to stretch my throat again (I have to every 6 months do to my dysphasia) and I love my surgeon, he seems to be the only one on my team who truly wants me better and to better my quality of life. Side note; I get a quick nap so that's always a bonus in my books. I talked to him about Dr. F and Dr. B as he apologized and wished he knew how to help me he did agree Dr F would have the answer if anything and he'd be happy to do any procedure that needed to be done. After that it was time to sleep, I always smile and laugh at this because the nurses only get a dose ready for my weight.. Ya not gonna sleep honey. They always ask Dr M if he's sure on my doses as he and I smile and he replies yes. "See you in 20 minutes hummingbird". Same results, full of inflammation (not air that's a point to remember) and dilated me to an 18 again, YES I can eat food without choking for the next 6-8 weeks this is a win for me.
After a couple weeks of fighting myself on calling Dr F to set an appointment I finally call; mostly because my dietitian wouldn't let up and I continuously feel like crap. Freddy is certainly pissed I can feed his fire orally again. I have his phone number typed into my phone "Just hit call, it's just setting an appointment you've done this hundreds of times. But what if he's not available, what if he says no? he won't say no, I have 4 doctors telling me he's the one. What if he doesn't believe me? What if he's just like all the others? JUST CALL, I can't. I'm afraid, frozen because of everything that's happened to me. Push the button Tamarra, what do you have to loose? FINE stop screaming at me, I'll call!" I close my eyes take to many deep breaths, heart pounding so hard it's hard to hear, hard to breath. I'm so hot.. "Oh hi, I'm sorry, I am calling to make and appointment with Dr. F" "Okay, do you have a referral and what are we seeing you for?" Gosh I HATE this part! So, I go over everything and the why I'm being told to see him. His nurse puts me on hold, comes back and says "Dr. F will call you once he reviews your charts" UGH! That is NEVER good. Defeat. He called me back, I was very much in shock. "Hello Ms Armstrong, I'm Dr F. I have reviewed your files and would also like to hear from you what you're feeling and going through and then I will tell you what I can do." So after me explaining yet again everything that's happening and why I was being referred to him I was not ready for what I heard next, tears came before he was even done. "Tamarra, I cannot help you, you are not a candidate for a cecostomy because you have no air in your GI track it's all inflammation. You were informed correctly that I do know quite a bit about Gastroparisis but not at the level of yours. I recommend you call UCLA they may be able to do more for you." I know he can hear me crying out of sheer frustration. "I am sorry, I wish I had the answers for you but you are to complicated of a case for many" Thanks doc. And with that the phone call ended. I cannot be the only person who has this! Why am I constantly told "no" and "you're to complicated" "I can't help you" It's almost like Freddy laughs at me with this news, "haha you still cannot get rid of me" he's mocking me I can feel it. Stupid Stupid Stupid. Step two: I have to tell my family, I have to see their faces fall as I tell them yet again I cannot be helped and this doctor is just like the others.
In the mix of all of these emotions my disability attorney calls and says "Good news, the state now considers you disabled and recognizes you are terminal. Congrats. Let me know if I can do anything else for you." Congrats? I'm terminally disabled and that deserves a congratulations? Now call me stupid but you congratulate on success not on defeat. I'm 36, I am to young to be on this list, but to sick to work anymore. Freddy wins again.
I have kept my job and work once to twice a week, I love my job. They know about my illnesses and work well with me. Plus everyone needs an out or you'll swallow yourself in depression. Working while sick adds a whole new level of stress and fears that cause extreme anxiety (guess that's where the disabilities come into play). My mind scares me; what if I need to go to the bathroom, what if my heart freaks out, what if Freddy shows his face to a point I cannot focus on my job due to the pain, can I handle all of the pregnancy comments. I am very respected at my job and appreciated, I love the looks of relief on my employee's face when I show up "oh good it's you" "we've missed you" "how are you feeling" "we know everything will run smoothly because you're here" all those bring smiles to my face and a purpose. I've worked at my job for 21 years and absolutely love it. Sure there are bad days but as long as the good out does that bad it's totally worth it. I'm exhausted after a shift but I wouldn't trade it. I am a seasoned Dispatcher and Security Sgt. for an amusement park, a place I have worked at for half of my life. I know my park like I know my own house. I have had to cut my availability way back, I've had to come to terms that I cannot control my body temp therefore that makes me unable to work outside in the elements. This was my first year I have not been on the park, mingling, doing my security checks, interacting with guests and employee's, watching family's experience the park together, watching eyes light up when they're finally tall enough to ride the ride they couldn't last year. Hearing laughter helps my days. Seeing happiness makes me smile. Doing my job makes me happy. Dispatching brings me a different type of happiness, I love that just as much. I love that even with being sick I can multi-task better than most, I can triage without being physically there. I always know where my employee's are as well as remember all the calls I've taken and logged. I do not let my job and responsibilities go to my head; I believe even with my promotions I have maintained a strong work ethic and a straight head. This season I had to let my body win or I would have suffered a thousand times more. At the end of every season many ask "Are you coming back next year?" "Only time will tell" I'd love to say yes but I cannot.
At the end of October it was time to do my annual doctor check up with my pcp (primary care physician) as I waited my turn I always wonder what people think, why are they there, what are they thinking of me? After vitals and weight I update the MA on "changes and meds" and wait. Dr S comes in with her head low but tried to have an upbeat "Hello", I give her an A for effort. I tell her what Dr F said as she stares at me in disbelief "My husband just had dinner with him, maybe I can have him put in a word for you". She's tried so many times to get me with people she honestly thinks and believes will help me. She told me to look into the Mayo clinic and was shocked when I told her I did and still have the letter of denial with the reason "We do not take patients if we know we cannot cure them, nor do we believe in giving a false hope" defeat. As she refills my meds and has now ordered compression socks (I'm retaining fluid now) I leave her office knowing I see my GI the next day and doubting her husband will have much of a say so.
Going into my GI appointment I knew he would tell me he cannot help, what I wasn't prepared for was what he put in my chart "Patients symptoms have worsened and nothing seems to be helping. There are no further treatments for her, she is terminal and it is recommended she write a medical directive." He hands me my "appointment summary" and I walk out of his office in a very dark haze. My mind oddly blank, my heart extremely sad. I know I'm sick but I didn't want to read it. To have it on paper makes it feel more real. No treatment plans? No course of action? I am not curable? Theirs nothing anyone can do? But I am 36, I have a ton of years left, right? Right, as long as I am stubborn and keep myself in control I have awhile. I have things to do, places to go, goals to reach. Terminal is a crappy word but it's one I'm now labeled. "Congrats Tamarra the state recognizes you as terminal"
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