A phone call to remember
I have numerous phone numbers I am always hesitant to answer, I know they are either medical or about my daughter who is battling her own issues. As I see the number pop up on my phone which came along with a name I knew as soon as I saw it was not good news (I was not in Utah when I got this phone call). My heart decided it would become so fast my head could not keep up with my thoughts, "Should I answer? What type of message would I get if I didn't? If I had questions how long would it take for me to get ahold of her again to get them answered?" As I walked to a quiet place to take the phone call, I could hear the words I was dreading to hear. She was speaking so fast and my mind racing with questions and wondering "Why me? Why can't I just catch a brake?" I was on a conference call, there was more than one person on the other line. "Tamarra you need a full colectomy and a TPN line, your entire large intestine and large colon are not working. If you'd like you should come to the ED and we will admit you to the ICU where you will stay until the specialist we have lined up for you can do your surgery." My first thought, "why now is it so urgent? I have been in this pain for months and have actively complained but not once did I think I was to this point". My first question "Will I need a colostomy bag?" weird question for most, vital to me. "Um well we don't really have the answer to that, that is a case by case basis. Some patients do end up having one for 3-6 months then as the healing is complete we take you back in and remove the bag and see how your "new system" works." I'm not okay with this answer, I can not have something sticking out of my body, I will emotionally die even more. My next question, "Why do I need a TPN line and for how long?" again, "we need to get your body healthier this is an pretty big surgery and where you're not eating as well as we'd like and you are not absorbing any nutrition or even food into your system you could take a turn that we'd rather you not take." My head is spinning. I ask if I can think about things, do some research and call them back when I get back into town. I heard hesitation but honestly, what are they going to say, "no you need to come in now, we don't care you're not in Utah?" We said our goodbye along with a couple "I'm sorry I am so difficult" and a lot of frustration, sadness and most of all anger.
As I sat in our uber on our way to Anaheim I silently cried and sent a text to Bryan "Bad call, I'll call you and tell you about it later". I told Steven what I was told and was looking at him as he to was processing what I had just said and the things he had heard while I was on the phone. The look of sheer defeat is what I was showing. Doubting on why I should continue with these surgeries that are supposed to help but seem to keep pushing me back and never forward. I have felt worse and worse as days go on, but most times I can hide them.
Once we got to the hotel I called Bryan on our way to Disneyland and gave him the low down on the phone call, he to had more questions than I could answer. Answers I didn't have and questions I already thought of. As I take a deep breath and look at Steven with the words of "Well, theirs nothing I can do about this now so lets just shake it off and enjoy our little vacation." With those words we started walking. My head was not quiet, my mind in a whole other place other than where I was. Wondering why this has all of a sudden become so urgent. I knew why, my guts are like the LA freeway during rush hour, no movement and a serious pain! Around 10pm I text my mom and said, "I got a bad phone call, I can tell you about it now or when I get home", she called less than 5 minutes later. She to feels the frustrations I do, but she holds guilt, a guilt I wish I could take from her. We know everything I carry is all genetic and somehow I was lucky enough to take everything (internal) from both sides of my parents.
By now my stomach is a constant size of a 4 month pregnant woman and as hard as a basketball which has been overinflated. Eating is a quest all in it's own and has to be done 15 times a day. Nothing makes someone feel insecure and self conscious as to questions like, "Tamarra always has to have something to eat". You don't hear the words I do and if you do, you do your best to ignore them. People judge and the world is cruel. Bryan sends me to Disneyland as often as he can (and takes a lot of crap for that and to me, those people can piss off), theres many reasons he does this for me. I have a wonderful traveling companion who I trust with my life (as does Bryan) when I am down there I know that for the short time, the worries of "Right now appointments" can not hinder my slight vacation. I take these vacations to reset my mind and get me back into a good place. Now don't get me wrong, my body does not ease up while I am away but when I am down there I have a stronger control most days and Steven really has no issue helping me out and even running and grabbing me treats while I'm sitting and watching whatever it is I am watching. He to knows that when I am quiet there are few reasons as to why; either I am hurting, feeling guilty by being sick, processing how I am going to tell everyone that I need yet another major surgery and sometimes I just want to sit and watch, I don't want to talk (my head talks constantly), Sitting in silence sometimes is the best for me, listening to my body, watching it throw its tantrums knowing their is NOTHING I can do for it. I try to keep things inside and lately I've not done very well at that, I've been informed I take my hurting out on people and I am "overly mean" one cannot change that, that just helps me remember why I feel like such a burden, why do people want to be around me if I am "to mean for them"?
Doing research on the internet you will always come to the conclusion "yep I'm screwed and am dying sometime next week". So I reach out to a few trusted people and ask them about their experiences. I trust word of mouth more than I do the internet. I get lists together so I can ask my surgeon questions and seeing if he agrees with the new plan. I'm terrified, my GI surgeon does not do this surgery I need. I asked him if he would at least assist his response, "my little humming bird, you know I gain more knowledge because of you. If it is possible I will be there in the OR with your surgeon specialist" I hate new doctors and going over everything with them. They can read right? Weigh in's are instant panic for me, my head scream "Please be above 98 I do not want a feeding tube this is my off year". I am supposed to go to Cancun this August, I am not going to allow my body to ruin this for me and my family! I have my god-niece coming into this world by September and their is no way I will miss her entry! I have been present at all of my sisters births and I am not missing this one because Freddy wants to be a jerk!
I am so very tired lately, my eyes burn from no sleep, my body hurting in every way it can, my motivation is gone at this point, but my stubbornness is still very present and I am always willing and able for a good fight, in fact, I thrive off them. I would much rather fight, then I can be angry and I love that emotion, it's my go do. Pity is not there for me, but, I have a million questions. Just when you think what else can go wrong, I get slammed with that "something". I am still currently working which challenges me daily, I have worked more hours this week and last than I did the entire year last year. Trust me, I feel it.
I try to stay strong when my kids are around, the looks on their faces when I'm crying or pacing, yelling for no reason (not at them). They ask "what's wrong and do I need to go to the hospital" sadly that has become a routine in this house. Once I notice they're watching me I can clear up these tears, put on my mom game and you'd never know the burning fire running a number on the inside of me. Freddy is a jerk! He likes to make life miserable at the most inconvenient times (in reality, why would he attack me when its convenient?)
My ability to swallow consistence has changed again (thank you body) so no more steaks for this girl. I choke 2-4 times before the food goes down and then sits there, like a sausage machine that doesn't squeeze and doesn't give me any nutrients. It just sits there, mocking me.. Daring me to venture out or eat again. Seeing if I will give into this sick game my body seems to be playing. I get asked, "what do you eat in a day?" I never know.. Sometimes I only eat one meal and their are other days I cant stop eating (those days are usually when I am in California) "What foods can you eat?" again Freddy controls that and it varies daily. Think of it like a pregnant woman, you crave something, so you eat it, the baby hates it so now your sick. That's me. I listen, I feed it, I pay for it. Right now I am at a stand still on what I can eat without it effecting me. Even small snacks are not working. I eat a cracker and my body looks as though I swallowed a watermelon. Stupid Freddy! There are many days I call my mom and sister bawling just so I can be distracted while I am driving home (and yes I realize that all familiar "distracted driving" statement) my family has learned that usually by the time I call I am to emotional and hurting to bad to say anything so they do the talking and I focus on their words, what they're saying and begging myself to keep driving, I know I can make it home. Home is where I can hide. No reasons for ED's you don't know what it feels like when you go into one and you're marked "36/yo F abdominal pain" I hate that label! If I'm in the er it is because I need help and I've fallen behind or my hernia has now caused a complete blockage, I am not their for pain meds, I have my own! I have one ED I prefer and sadly it is one my insurance does not cover. They know me there, they ask me what I would like them to do. Usually it's just me begging to get the pain under control, do a quick CT than I go home, a 2 hour visit. All the other ED's 4-8 hours with little help. I hate them! And I hate that because of drug abusers I get labeled!
So for now, I am awaiting my surgical consult which is in June and I will find out some answers and probably double the questions, I am pretty positive a TPN is coming sooner than I would like. So after over a week and numerous attempts at "updating" my messed up medical saga here's the update in a nut shell: 1) I need a total colectomy 2) I need a TPN line 3) I am currently still working 4) I am sick on a daily vs sporadically 5) I am grateful for the people I do have in my life 6) I am still fighting and just as stubborn 7) please be mindful for illnesses you cannot see, I may look better but I can contest, I am not!
Btw: "What doesn't kill you makes you stronger" is a bunch of crap!
~Hummingbird
I have numerous phone numbers I am always hesitant to answer, I know they are either medical or about my daughter who is battling her own issues. As I see the number pop up on my phone which came along with a name I knew as soon as I saw it was not good news (I was not in Utah when I got this phone call). My heart decided it would become so fast my head could not keep up with my thoughts, "Should I answer? What type of message would I get if I didn't? If I had questions how long would it take for me to get ahold of her again to get them answered?" As I walked to a quiet place to take the phone call, I could hear the words I was dreading to hear. She was speaking so fast and my mind racing with questions and wondering "Why me? Why can't I just catch a brake?" I was on a conference call, there was more than one person on the other line. "Tamarra you need a full colectomy and a TPN line, your entire large intestine and large colon are not working. If you'd like you should come to the ED and we will admit you to the ICU where you will stay until the specialist we have lined up for you can do your surgery." My first thought, "why now is it so urgent? I have been in this pain for months and have actively complained but not once did I think I was to this point". My first question "Will I need a colostomy bag?" weird question for most, vital to me. "Um well we don't really have the answer to that, that is a case by case basis. Some patients do end up having one for 3-6 months then as the healing is complete we take you back in and remove the bag and see how your "new system" works." I'm not okay with this answer, I can not have something sticking out of my body, I will emotionally die even more. My next question, "Why do I need a TPN line and for how long?" again, "we need to get your body healthier this is an pretty big surgery and where you're not eating as well as we'd like and you are not absorbing any nutrition or even food into your system you could take a turn that we'd rather you not take." My head is spinning. I ask if I can think about things, do some research and call them back when I get back into town. I heard hesitation but honestly, what are they going to say, "no you need to come in now, we don't care you're not in Utah?" We said our goodbye along with a couple "I'm sorry I am so difficult" and a lot of frustration, sadness and most of all anger.
As I sat in our uber on our way to Anaheim I silently cried and sent a text to Bryan "Bad call, I'll call you and tell you about it later". I told Steven what I was told and was looking at him as he to was processing what I had just said and the things he had heard while I was on the phone. The look of sheer defeat is what I was showing. Doubting on why I should continue with these surgeries that are supposed to help but seem to keep pushing me back and never forward. I have felt worse and worse as days go on, but most times I can hide them.
Once we got to the hotel I called Bryan on our way to Disneyland and gave him the low down on the phone call, he to had more questions than I could answer. Answers I didn't have and questions I already thought of. As I take a deep breath and look at Steven with the words of "Well, theirs nothing I can do about this now so lets just shake it off and enjoy our little vacation." With those words we started walking. My head was not quiet, my mind in a whole other place other than where I was. Wondering why this has all of a sudden become so urgent. I knew why, my guts are like the LA freeway during rush hour, no movement and a serious pain! Around 10pm I text my mom and said, "I got a bad phone call, I can tell you about it now or when I get home", she called less than 5 minutes later. She to feels the frustrations I do, but she holds guilt, a guilt I wish I could take from her. We know everything I carry is all genetic and somehow I was lucky enough to take everything (internal) from both sides of my parents.
By now my stomach is a constant size of a 4 month pregnant woman and as hard as a basketball which has been overinflated. Eating is a quest all in it's own and has to be done 15 times a day. Nothing makes someone feel insecure and self conscious as to questions like, "Tamarra always has to have something to eat". You don't hear the words I do and if you do, you do your best to ignore them. People judge and the world is cruel. Bryan sends me to Disneyland as often as he can (and takes a lot of crap for that and to me, those people can piss off), theres many reasons he does this for me. I have a wonderful traveling companion who I trust with my life (as does Bryan) when I am down there I know that for the short time, the worries of "Right now appointments" can not hinder my slight vacation. I take these vacations to reset my mind and get me back into a good place. Now don't get me wrong, my body does not ease up while I am away but when I am down there I have a stronger control most days and Steven really has no issue helping me out and even running and grabbing me treats while I'm sitting and watching whatever it is I am watching. He to knows that when I am quiet there are few reasons as to why; either I am hurting, feeling guilty by being sick, processing how I am going to tell everyone that I need yet another major surgery and sometimes I just want to sit and watch, I don't want to talk (my head talks constantly), Sitting in silence sometimes is the best for me, listening to my body, watching it throw its tantrums knowing their is NOTHING I can do for it. I try to keep things inside and lately I've not done very well at that, I've been informed I take my hurting out on people and I am "overly mean" one cannot change that, that just helps me remember why I feel like such a burden, why do people want to be around me if I am "to mean for them"?
Doing research on the internet you will always come to the conclusion "yep I'm screwed and am dying sometime next week". So I reach out to a few trusted people and ask them about their experiences. I trust word of mouth more than I do the internet. I get lists together so I can ask my surgeon questions and seeing if he agrees with the new plan. I'm terrified, my GI surgeon does not do this surgery I need. I asked him if he would at least assist his response, "my little humming bird, you know I gain more knowledge because of you. If it is possible I will be there in the OR with your surgeon specialist" I hate new doctors and going over everything with them. They can read right? Weigh in's are instant panic for me, my head scream "Please be above 98 I do not want a feeding tube this is my off year". I am supposed to go to Cancun this August, I am not going to allow my body to ruin this for me and my family! I have my god-niece coming into this world by September and their is no way I will miss her entry! I have been present at all of my sisters births and I am not missing this one because Freddy wants to be a jerk!
I am so very tired lately, my eyes burn from no sleep, my body hurting in every way it can, my motivation is gone at this point, but my stubbornness is still very present and I am always willing and able for a good fight, in fact, I thrive off them. I would much rather fight, then I can be angry and I love that emotion, it's my go do. Pity is not there for me, but, I have a million questions. Just when you think what else can go wrong, I get slammed with that "something". I am still currently working which challenges me daily, I have worked more hours this week and last than I did the entire year last year. Trust me, I feel it.
I try to stay strong when my kids are around, the looks on their faces when I'm crying or pacing, yelling for no reason (not at them). They ask "what's wrong and do I need to go to the hospital" sadly that has become a routine in this house. Once I notice they're watching me I can clear up these tears, put on my mom game and you'd never know the burning fire running a number on the inside of me. Freddy is a jerk! He likes to make life miserable at the most inconvenient times (in reality, why would he attack me when its convenient?)
My ability to swallow consistence has changed again (thank you body) so no more steaks for this girl. I choke 2-4 times before the food goes down and then sits there, like a sausage machine that doesn't squeeze and doesn't give me any nutrients. It just sits there, mocking me.. Daring me to venture out or eat again. Seeing if I will give into this sick game my body seems to be playing. I get asked, "what do you eat in a day?" I never know.. Sometimes I only eat one meal and their are other days I cant stop eating (those days are usually when I am in California) "What foods can you eat?" again Freddy controls that and it varies daily. Think of it like a pregnant woman, you crave something, so you eat it, the baby hates it so now your sick. That's me. I listen, I feed it, I pay for it. Right now I am at a stand still on what I can eat without it effecting me. Even small snacks are not working. I eat a cracker and my body looks as though I swallowed a watermelon. Stupid Freddy! There are many days I call my mom and sister bawling just so I can be distracted while I am driving home (and yes I realize that all familiar "distracted driving" statement) my family has learned that usually by the time I call I am to emotional and hurting to bad to say anything so they do the talking and I focus on their words, what they're saying and begging myself to keep driving, I know I can make it home. Home is where I can hide. No reasons for ED's you don't know what it feels like when you go into one and you're marked "36/yo F abdominal pain" I hate that label! If I'm in the er it is because I need help and I've fallen behind or my hernia has now caused a complete blockage, I am not their for pain meds, I have my own! I have one ED I prefer and sadly it is one my insurance does not cover. They know me there, they ask me what I would like them to do. Usually it's just me begging to get the pain under control, do a quick CT than I go home, a 2 hour visit. All the other ED's 4-8 hours with little help. I hate them! And I hate that because of drug abusers I get labeled!
So for now, I am awaiting my surgical consult which is in June and I will find out some answers and probably double the questions, I am pretty positive a TPN is coming sooner than I would like. So after over a week and numerous attempts at "updating" my messed up medical saga here's the update in a nut shell: 1) I need a total colectomy 2) I need a TPN line 3) I am currently still working 4) I am sick on a daily vs sporadically 5) I am grateful for the people I do have in my life 6) I am still fighting and just as stubborn 7) please be mindful for illnesses you cannot see, I may look better but I can contest, I am not!
Btw: "What doesn't kill you makes you stronger" is a bunch of crap!
~Hummingbird
I'm proud of you sweetheart and will support you in every way I can. If anyone could help spread awareness of https://www.gofundme.com/26kn9x8c it's much needed and very much appreciated
ReplyDeleteOh Tamarra, I don't know what to say except I'm so sorry for this news! My prayers for you and Bryan are without ceasing that God would grant you the miracle you are so desperately in need of and deserving of. Live each day to the fullest to the best of your ability. Take NO moment for granted as each moment with loved ones is precious! Enjoy the little things...a laugh, the sunrise/sunset, rain on your face, the wind in your hair, sand between your toes, a baby's smile or cry and most importantly the love of those in your inner circle! I wish I had the opportunity to meet you and Bryan and give you both a BIG BEAR HUG �� but for now a virtual HUG will have to do. I feel honored to have made a connection with you and Bryan. Keep the faith and talking with God. Smooches����
ReplyDeleteThank you. Your words mean a lot to me.
Delete