(no subject)
Ok... So I'm doing this here because I've got to get some stuff out. If you don't want to read about whining and ranting and tantrums and woe is me stuff... stop here. I won't be offended.
Couple of things first... Yes, I have a therapist appointment next week. They're a new therapist so I'm not sure how that'll go. The reason I'm ranting and raving HERE is because ... I'm simply overwhelmed. I have to get it out. I'm HOPING by doing this I'll get a sense of relief and won't let it all sit in my head. My brain is my worst enemy some days/nights.
I need to state. I don't need pity. I just need... support. I don't need someone to kick my butt and tell me that "everything will be fine, I'm sure of it". The facts are, none of my doctors are sure things will be fine. They're doing the best they can but there are no guarantees.
So most of you know how this all went down with my getting so sick. I'll skip that.
I've had a lot of help from my room mate Alisha. She has been a huge help and is an amazing room mate/friend/coworker. I can't think her enough. She's made very difficult process easier in a number of ways.
Life is very rough. The complications from surgery are not getting better. My heart is still having pretty bad issues. I THINK I'm adjusting to the 135 bpm it stays steady at. My feeding tube is very badly infected with MRSA. I'm losing a ton of weight. (which is good and bad, depending on who you ask).
It seems like for every step forward I take, I take two huge steps backward. Things simply are not getting better. The possible complications that have come up are ones that no one expected.
And there are days where I want to scream and stomp my feet about how unfair the whole thing is. How I may not be a perfect diabetic but I am CERTAINLY not the worst. How I didn't deserve this diabetes complication.
And it feels like every decision that is made for me... or I make... is not wrong? but there are no other options. "You can choose a... or a".
I'm physically and mentally exhausted. I'm tired of all the doctors appointments. I'm tired of feeling like total crap all the time. I have some ok days where I do ok at work and accomplish some things. But my bad days far outweigh the ok ones. Where i'm in pain or totally nauseated. I have nausea meds that I push through my feeding tube and they work well. But I don't want to develop a tolerance to it so that it takes more to help with wanting to vomit. I am not taking any pain meds other than Tylenol or Advil in the hopes it helps. It doesn't.
I'm just so tired. I'm exhausted. I'm tired of trying. I just don't see the point anymore. There is no fix for what's wrong with me really. The possible fix that was on the table that we're still shooting for is far away now. The surgeon is trying... but there is an awful lot of red tape.
I'm so discouraged. I'm not frustrated. I'm just over it all. I'm not suicidal (in case anyone is worried). I'm just... tired.
I'm staying on all my antidepressant meds. I'm so thankful for them. I know if I didn't have them I'd be in a whole lot of trouble.
The last ... 10 days or so have been extremely difficult. More that I've experienced... ever.
I have a MRSA infection in my tube site. It took a LONG time for them to even culture it to see if it was MRSA. Which was terribly frustrating for me. It explains why my site wasn't getting better, why it was still oozing and why it was constantly painful.
My other incisions healed nicely though!
So I've seen doctor after doctor after doctor (or people in the medical field).
Yesterday I went to see someone about getting some more knowledge about my feeding tube and how they impact my blood sugars. The nurse takes me back, does my vitals (clucks over my weight loss), and then asks to see my tube. So I pull up my shirt (lol I'll do it for anyone these days! just ask!) and she says "Oh Marin won't like that at all. She's going to be very unhappy" (Marin is the educator). Nurse leaves and says's she'll brb. Comes back in a couple minutes with Marin (whom I've never met) and two doctors. Doctors introduce themselves and ask if they can see my tube site. So again, lift up my shirt and show them. Without missing a beat they both say "yeah that needs to be pulled right now". Yeah.... So chaos ensues. Marin, one of the docs and the nurse go and are hunting down supplies (new feeding tube, lidocaine to numb it etc). I'm mentally freaking out. They all come back in and tell me that they're going to cut the sutures keeping it in, pull the tube and try to put another one in (a different type).
So they pull the tube... it's uncomfortable but doesn't hurt a ton. When I see it, it's covered in stomach bile and puss. Yeah, thanks MRSA infection. And then they tried to put this other type of tube in. Yeah. I screamed. It hurt so freaking bad. Out comes more lidocaine. Everyone is trying to be so supportive and telling me I'm doing great. They do the same tube type that they just pulled out... by now I've got tears streaming down my face and am in super pain. They get it in and tape it down (I had sutures keeping it in place before) they caution me to keep it taped but it should be more difficult to pull out. Ok fine... and on my way I go.... in pain and hobbling like an old lady.
So I go back to work... and I'm in pain still. But I don't want to take one of my last two oxycodones. (and I'm glad I didn't now).
Get all my stuff taken care of (as far as errands etc), come home, start my feeding tube.
I go to bed. I can't sleep. Can't get comfortable. I'm not anxious... just... I dunno. Couldn't relax or something.
I go to check my phone to see what time it was... and feel a breeze his my stomach... and my shirt is wet. So I say out loud (to myself) "oh dear, this can't be good"
I use my phone to look... and no. very bad. My tube has come totally out some how. sigh.
There's blood and gook and other stuff. I get up, knock on alisha's door and ask her to take me to the ER. I change into NON blood stained clothes and we head out.
Get to the ER, they red sheet me because of my heart rate and what's going on. By the time I get to the back and am changing the doctor is knocking on the door to look at the site. So he looks at it and asks for a foley catheter. He (not so gently) shoves that in (it was pretty skinny but man did it hurt). But he had to keep it open while they hunt down a another feeding tube. They get one rather quickly and he (again not so gently) puts it in, causes me a LOT of pain. Tears again....
Get an xray with contrast to make sure it's in my small bowel and not my stomach... (it hurt when they were pushing the contrast via feeding tube). Get back to my room and about 10 or so minutes later the ER doc is back.
They got it in the right places... sort of. He only managed to get 10cm in. My original surgeon did 20cm. So he releases me and tells me to call my doctor first thing in the morning and to NOT do tube feeds until I see him.
See my surgeon this afternoon. He's NOT happy about the last 16 hours. He's not happy he wasn't called about pulling the tube in the first place. But he agrees that a different type of tube is the way to go, because it'll last longer. yay?
So he pulls the one that has been causing me pain from the ER... yeah... it was in the right area but not far enough in. So when I tried to do nausea meds this morning (because I was SO sick) and used water to "flush" it... it didn't go very far. he pulled the tube and all the nausea medication came out with it (and other gross stuff).
He puts a new one in... again, no numbing meds... and although he's much more gentle than the ER doc... it hurts. A lot. But now I think it's in the right place. It doesn't feel like the one from the ER.
But now I feel worse than ever. I feel like I did when I was 2 weeks post op as far as pain goes. I can't walk standing up straight, I can't bend over, I can't do anything. I feel like what progress I DID make... went out the window.
I'm so... tired. I'm tired of fighting the battles. I'm tired of not having someone to help me make decisions. I'm tired of going to appointments alone and getting scared and overwhelmed with information. When I get scared I quit listening. So I take the chance on missing important details. I could record it and play it for someone... but that's silly. What if the person I play it for has questions? It's not like I've got the answers. This is all new to me.
And I feel needy. My gi doc's MA knows my voice, my surgeon's receptionist does too. I know I call a lot but I've had so many problems and I have no one I can lean on who has been through this.
I'm tired of trying to be optimistic. I keep smiling and saying "It'll get better" but really? None of my doctors can say that. They don't know.
I'm so discouraged. I'm tired. This is one of the rare times I wish I had a spouse or a parent to go with me to see these doctors. Would they help? Maybe. Maybe not. But in my world anyone has to be better than doing this alone.
My friends have been amazingly supportive. You guys are great. I love you all. But I need someone local. I need someone who's invested in my getting better. I need someone who won't blow rainbows up my butt and tell me it'll get better. Because every time I say that, it gets worse.
One step forward, three steps back.
Had I known this was what was going to happen if I chose this path, I'm honestly not sure I would have done the surgery. A huge part of me says it simply isn't worth the pain and the uncertainty of if this will work.
I may NEVER eat again other than a couple bites. That's my reality. I will spend 10 hours a day hooked up to a feeding tube. What kind of life is that? Never go out (or if I do my feed schedule has to be changed and it's not exactly flexible). Live life out of my home. Become a recluse more than I am. Is that what I really want? No.
I just need something to go right for me with this... something to show me it's worth it.
Couple of things first... Yes, I have a therapist appointment next week. They're a new therapist so I'm not sure how that'll go. The reason I'm ranting and raving HERE is because ... I'm simply overwhelmed. I have to get it out. I'm HOPING by doing this I'll get a sense of relief and won't let it all sit in my head. My brain is my worst enemy some days/nights.
I need to state. I don't need pity. I just need... support. I don't need someone to kick my butt and tell me that "everything will be fine, I'm sure of it". The facts are, none of my doctors are sure things will be fine. They're doing the best they can but there are no guarantees.
So most of you know how this all went down with my getting so sick. I'll skip that.
I've had a lot of help from my room mate Alisha. She has been a huge help and is an amazing room mate/friend/coworker. I can't think her enough. She's made very difficult process easier in a number of ways.
Life is very rough. The complications from surgery are not getting better. My heart is still having pretty bad issues. I THINK I'm adjusting to the 135 bpm it stays steady at. My feeding tube is very badly infected with MRSA. I'm losing a ton of weight. (which is good and bad, depending on who you ask).
It seems like for every step forward I take, I take two huge steps backward. Things simply are not getting better. The possible complications that have come up are ones that no one expected.
And there are days where I want to scream and stomp my feet about how unfair the whole thing is. How I may not be a perfect diabetic but I am CERTAINLY not the worst. How I didn't deserve this diabetes complication.
And it feels like every decision that is made for me... or I make... is not wrong? but there are no other options. "You can choose a... or a".
I'm physically and mentally exhausted. I'm tired of all the doctors appointments. I'm tired of feeling like total crap all the time. I have some ok days where I do ok at work and accomplish some things. But my bad days far outweigh the ok ones. Where i'm in pain or totally nauseated. I have nausea meds that I push through my feeding tube and they work well. But I don't want to develop a tolerance to it so that it takes more to help with wanting to vomit. I am not taking any pain meds other than Tylenol or Advil in the hopes it helps. It doesn't.
I'm just so tired. I'm exhausted. I'm tired of trying. I just don't see the point anymore. There is no fix for what's wrong with me really. The possible fix that was on the table that we're still shooting for is far away now. The surgeon is trying... but there is an awful lot of red tape.
I'm so discouraged. I'm not frustrated. I'm just over it all. I'm not suicidal (in case anyone is worried). I'm just... tired.
I'm staying on all my antidepressant meds. I'm so thankful for them. I know if I didn't have them I'd be in a whole lot of trouble.
The last ... 10 days or so have been extremely difficult. More that I've experienced... ever.
I have a MRSA infection in my tube site. It took a LONG time for them to even culture it to see if it was MRSA. Which was terribly frustrating for me. It explains why my site wasn't getting better, why it was still oozing and why it was constantly painful.
My other incisions healed nicely though!
So I've seen doctor after doctor after doctor (or people in the medical field).
Yesterday I went to see someone about getting some more knowledge about my feeding tube and how they impact my blood sugars. The nurse takes me back, does my vitals (clucks over my weight loss), and then asks to see my tube. So I pull up my shirt (lol I'll do it for anyone these days! just ask!) and she says "Oh Marin won't like that at all. She's going to be very unhappy" (Marin is the educator). Nurse leaves and says's she'll brb. Comes back in a couple minutes with Marin (whom I've never met) and two doctors. Doctors introduce themselves and ask if they can see my tube site. So again, lift up my shirt and show them. Without missing a beat they both say "yeah that needs to be pulled right now". Yeah.... So chaos ensues. Marin, one of the docs and the nurse go and are hunting down supplies (new feeding tube, lidocaine to numb it etc). I'm mentally freaking out. They all come back in and tell me that they're going to cut the sutures keeping it in, pull the tube and try to put another one in (a different type).
So they pull the tube... it's uncomfortable but doesn't hurt a ton. When I see it, it's covered in stomach bile and puss. Yeah, thanks MRSA infection. And then they tried to put this other type of tube in. Yeah. I screamed. It hurt so freaking bad. Out comes more lidocaine. Everyone is trying to be so supportive and telling me I'm doing great. They do the same tube type that they just pulled out... by now I've got tears streaming down my face and am in super pain. They get it in and tape it down (I had sutures keeping it in place before) they caution me to keep it taped but it should be more difficult to pull out. Ok fine... and on my way I go.... in pain and hobbling like an old lady.
So I go back to work... and I'm in pain still. But I don't want to take one of my last two oxycodones. (and I'm glad I didn't now).
Get all my stuff taken care of (as far as errands etc), come home, start my feeding tube.
I go to bed. I can't sleep. Can't get comfortable. I'm not anxious... just... I dunno. Couldn't relax or something.
I go to check my phone to see what time it was... and feel a breeze his my stomach... and my shirt is wet. So I say out loud (to myself) "oh dear, this can't be good"
I use my phone to look... and no. very bad. My tube has come totally out some how. sigh.
There's blood and gook and other stuff. I get up, knock on alisha's door and ask her to take me to the ER. I change into NON blood stained clothes and we head out.
Get to the ER, they red sheet me because of my heart rate and what's going on. By the time I get to the back and am changing the doctor is knocking on the door to look at the site. So he looks at it and asks for a foley catheter. He (not so gently) shoves that in (it was pretty skinny but man did it hurt). But he had to keep it open while they hunt down a another feeding tube. They get one rather quickly and he (again not so gently) puts it in, causes me a LOT of pain. Tears again....
Get an xray with contrast to make sure it's in my small bowel and not my stomach... (it hurt when they were pushing the contrast via feeding tube). Get back to my room and about 10 or so minutes later the ER doc is back.
They got it in the right places... sort of. He only managed to get 10cm in. My original surgeon did 20cm. So he releases me and tells me to call my doctor first thing in the morning and to NOT do tube feeds until I see him.
See my surgeon this afternoon. He's NOT happy about the last 16 hours. He's not happy he wasn't called about pulling the tube in the first place. But he agrees that a different type of tube is the way to go, because it'll last longer. yay?
So he pulls the one that has been causing me pain from the ER... yeah... it was in the right area but not far enough in. So when I tried to do nausea meds this morning (because I was SO sick) and used water to "flush" it... it didn't go very far. he pulled the tube and all the nausea medication came out with it (and other gross stuff).
He puts a new one in... again, no numbing meds... and although he's much more gentle than the ER doc... it hurts. A lot. But now I think it's in the right place. It doesn't feel like the one from the ER.
But now I feel worse than ever. I feel like I did when I was 2 weeks post op as far as pain goes. I can't walk standing up straight, I can't bend over, I can't do anything. I feel like what progress I DID make... went out the window.
I'm so... tired. I'm tired of fighting the battles. I'm tired of not having someone to help me make decisions. I'm tired of going to appointments alone and getting scared and overwhelmed with information. When I get scared I quit listening. So I take the chance on missing important details. I could record it and play it for someone... but that's silly. What if the person I play it for has questions? It's not like I've got the answers. This is all new to me.
And I feel needy. My gi doc's MA knows my voice, my surgeon's receptionist does too. I know I call a lot but I've had so many problems and I have no one I can lean on who has been through this.
I'm tired of trying to be optimistic. I keep smiling and saying "It'll get better" but really? None of my doctors can say that. They don't know.
I'm so discouraged. I'm tired. This is one of the rare times I wish I had a spouse or a parent to go with me to see these doctors. Would they help? Maybe. Maybe not. But in my world anyone has to be better than doing this alone.
My friends have been amazingly supportive. You guys are great. I love you all. But I need someone local. I need someone who's invested in my getting better. I need someone who won't blow rainbows up my butt and tell me it'll get better. Because every time I say that, it gets worse.
One step forward, three steps back.
Had I known this was what was going to happen if I chose this path, I'm honestly not sure I would have done the surgery. A huge part of me says it simply isn't worth the pain and the uncertainty of if this will work.
I may NEVER eat again other than a couple bites. That's my reality. I will spend 10 hours a day hooked up to a feeding tube. What kind of life is that? Never go out (or if I do my feed schedule has to be changed and it's not exactly flexible). Live life out of my home. Become a recluse more than I am. Is that what I really want? No.
I just need something to go right for me with this... something to show me it's worth it.