I've been in a funk all day thanks to the wonderful doctor's appointment earlier.
I'm sick of being sick to put it lightly. I know people who have the same thing as me and are on their own medications and if they stay on it, then they don't get flare ups. Then there is me. I take my medication religiously and I still get the flare ups. Then I have to go back on the steroids which is not good for my bones until we figure out what to do next.
Welp, my doctor laid out the options for me today and as I was sitting there listening to my options, I couldn't help but hold back all my tears. I just want to be normal again.
So basically the 6mp that I have been on since last summer isn't working. I have to be on a lower dose then normal because it messed with my liver and so at a lower dosing, and a flare up, he has determined that we need to have another course of action to deal with this colitisis. I get to choose from two things. Lucky me.
First option is to get an injection of methotraxate every week. Unfortunately, working in a pharmacy I am privy to things most people would not know, which means I asked the doctor if the tablets are the equivalent to the vials because the injection has been on a back order for as long as I can remember. He said it's not the same thing and he would want me to do the injection. Which means this option is not an option at this time because if I can't get the drug, then I can't inject it into me to feel better.
Option 2 is an IV treatment. I forget what the medication is called but basically I would go down to his office for a 3 to 4 hours IV treatment. To begin, I would need to get the treatment every 2 weeks but then I would be able to go every 8 weeks. With this treatment though, I have to go to the doctor's office, but it means that I won't have to take all my pills.
Now some people may say "Jen, it's a no brainer. Do the IV treatment if it means getting better. Plus not more pills." And while that is definitely a plus, I don't want to have to take a chunk of my day to just sit around while this IV drips into me. It makes me think I'm getting a cancer treatment. Which from my research on both of the drugs this afternoon, they are used to treat cancer first and foremost. I shouldn't be sitting here having a pity party on the fact I have to take some medication that treats cancer when I don't have it but I'm sorry, it's been a tough day to basically be told you have to do IV treatment.
When I get a real job, how do I explain having to take a half day or a day off every 8 weeks to sit in a room and get an IV drip. Is the IV going to have to only go in my hand because the veins in my elbow aren't strong enough to deal with any more pokes. Will I have to do this for the rest of my life? Will it actually work?
This doctor has not let me down yet, but I was hoping that this 6mp would have worked for me for the rest of my life. I don't want to do the IV or injection. I much rather take pills. If you had asked me in high school if I imagined myself crying about medications to treat a stomach problem, I would have said no. I just want to be better.....
Showing posts with label bad mood. Show all posts
Showing posts with label bad mood. Show all posts
Tuesday, May 29, 2012
Sunday, April 15, 2012
No Excuses, Play Like a Champ
I have spend most of this gorgeous weekend sleeping in my room. Fact.
It's not like I want to, but when you don't feel well, all you wanna do is sleep. Right now, my body feels like it's gotten hit by a truck and takes serious effort to stand and/or hold things. I hate being this weak, because I like standing on my own but jeez....I'm weak at this time.
I have had a few friends and my parents tell me I am strong. One told me I had to play like a champ. With people like that who believe in you? How can you want to cry all the time because you are not doing okay. I'm trying to figure that out. Part of me thinks the tears after hearing these things are because I'm afraid I am going to disappoint them when I am not that strong. But then I think they have stuck by my side through all of this so I'm assuming they will still be there.
Greg told me today how I looked like shit when I first walked into Nana's. I really wish it was a hang over like he said.
Boost seems to be sitting with me okay at the moment. I haven't been eating so I decided that it was a good idea to have some sort of supplement (ohhh heyyy body builder) and it's working at the moment. Knock on wood.
Work this week is going to be a challenge but I am going to persevere. It's what I have been doing for the past year and a half. Fighting and winning the battles.
It's not like I want to, but when you don't feel well, all you wanna do is sleep. Right now, my body feels like it's gotten hit by a truck and takes serious effort to stand and/or hold things. I hate being this weak, because I like standing on my own but jeez....I'm weak at this time.
I have had a few friends and my parents tell me I am strong. One told me I had to play like a champ. With people like that who believe in you? How can you want to cry all the time because you are not doing okay. I'm trying to figure that out. Part of me thinks the tears after hearing these things are because I'm afraid I am going to disappoint them when I am not that strong. But then I think they have stuck by my side through all of this so I'm assuming they will still be there.
Greg told me today how I looked like shit when I first walked into Nana's. I really wish it was a hang over like he said.
Boost seems to be sitting with me okay at the moment. I haven't been eating so I decided that it was a good idea to have some sort of supplement (ohhh heyyy body builder) and it's working at the moment. Knock on wood.
Work this week is going to be a challenge but I am going to persevere. It's what I have been doing for the past year and a half. Fighting and winning the battles.
Thursday, November 17, 2011
Cold Weather Blues
Colder weather is moving in. And once again the only good thing to look forward to with the cold weather is it means that my birthday is approaching. However, turning 25 is not something I am looking forward to.
Anyway, that's not why I bring up the colder weather. Colder weather means that people are getting sick and needing medication. And I'm not just talking about 1 or 2 people. I'm talking droves of people. And while it's nice being busy at work, I am not a fan of people's attitudes during this holiday season.
I thought I dealt with a lot of different people up front, but in the pharmacy, people are brutal. I understand you don't feel well. I understand you want to get better and want to get your medication as soon as possible to start getting back to "normal". However, I have a few pieces of advice for you. Treat me like a human being. Your doctor is not working behind our counters. When he tells you that your medication is going to be all set by the time you get to the pharmacy, he's not the one counting it. You are also not our only patient and while your predicament may seem vitally important, there are other people going through the same thing as you who also want to get better.
Listen, I'm all for every single person who comes through our pharmacy to get better. I'm not for being treated inhuman. I'm a person. You giving me bad attitude does hurt me sometimes. You not willing to pause your phone conversation while I'm trying to help you, and distracting you while I try to do my job, semi annoying. But I'm trying to help you. So please, treat me with respect. It'll make the whole process go a whole lot smoother and also make my day go by better.
I'm not sure what is going on with people recently, maybe everyone is stressed with the upcoming holiday, but I'm really tired of people giving me attitude all the time. Especially when 99 percent of the time it's because said person doesn't want to listen or accept an explanation I'm giving them.
It's lucky I work with people who make me laugh, because if I didn't? I would probably be in the corner rocking myself back and forth crying. Which I have been on the verge of doing multiple times recently thanks to our dear customers.
End rant. I can't wait till summertime.
Anyway, that's not why I bring up the colder weather. Colder weather means that people are getting sick and needing medication. And I'm not just talking about 1 or 2 people. I'm talking droves of people. And while it's nice being busy at work, I am not a fan of people's attitudes during this holiday season.
I thought I dealt with a lot of different people up front, but in the pharmacy, people are brutal. I understand you don't feel well. I understand you want to get better and want to get your medication as soon as possible to start getting back to "normal". However, I have a few pieces of advice for you. Treat me like a human being. Your doctor is not working behind our counters. When he tells you that your medication is going to be all set by the time you get to the pharmacy, he's not the one counting it. You are also not our only patient and while your predicament may seem vitally important, there are other people going through the same thing as you who also want to get better.
Listen, I'm all for every single person who comes through our pharmacy to get better. I'm not for being treated inhuman. I'm a person. You giving me bad attitude does hurt me sometimes. You not willing to pause your phone conversation while I'm trying to help you, and distracting you while I try to do my job, semi annoying. But I'm trying to help you. So please, treat me with respect. It'll make the whole process go a whole lot smoother and also make my day go by better.
I'm not sure what is going on with people recently, maybe everyone is stressed with the upcoming holiday, but I'm really tired of people giving me attitude all the time. Especially when 99 percent of the time it's because said person doesn't want to listen or accept an explanation I'm giving them.
It's lucky I work with people who make me laugh, because if I didn't? I would probably be in the corner rocking myself back and forth crying. Which I have been on the verge of doing multiple times recently thanks to our dear customers.
End rant. I can't wait till summertime.
Tuesday, May 17, 2011
Rant.
Thank you doctors outside my room. Seriously.
While I understand you are now two days familiar with my case, it really brings me a confidence to hear the hospital doctors questioning the decisions about my doctors for the past five months.
There is a reason why Dr. I has not said he was going to do a colonoscopy right at this moment; because he needs to talk to Dr. C (I think). There is a reason why we are being cautious, especially because it makes me nervous and I want to eat.
I'm glad to hear you guys question it a bunch and giggle at not understanding his call.
While I understand you are now two days familiar with my case, it really brings me a confidence to hear the hospital doctors questioning the decisions about my doctors for the past five months.
There is a reason why Dr. I has not said he was going to do a colonoscopy right at this moment; because he needs to talk to Dr. C (I think). There is a reason why we are being cautious, especially because it makes me nervous and I want to eat.
I'm glad to hear you guys question it a bunch and giggle at not understanding his call.
Thursday, April 21, 2011
Smiling But We're Close to Tears
The past few days have sucked. To put it mildly. I'm sorry I can't put it in better words but I am brutally honest and that's the hard truth.
Yesterday I found out that once again my INR levels are dropping. I feel like it's the stock market, and nothing I do can stop these stupid INR levels to drop. I'm at the highest level of my Warfarin ever and yet the stupid blood work is not giving me the results I need.
Dr. P wants me to see the Dr. C to determine when I can get off the Warfarin because I have "been on it for four months". I informed her that I was going next Monday and she said that should be fine to wait. I told her that my leg has become somewhat hard which it had not been and that it has been hurting. She told me waiting Monday should be okay.
I cried after getting off the phone with Dr. P. I cried (almost) at Pop's. I cried when I came home from work. Basically I have been in the worst mood ever, that even shopping didn't turn, and have been a hot mess ever since Saturday. Or at least that's when I have come to terms this whole funk has occurred.
It's become very difficult to be positive when nothing is going right. I am basically following everything they tell me to do and yet I get opposite results. The weeks that I was at the INR therapeutic levels? I had had a beer the night I would go out AND had a huge salad. Now I'm not doing either and it just keeps crashing. I'm just waiting for the whole thing to burn and for me to once again not be able to move because they can't figure this thing out. That's the point I have gotten to now. I'm expecting that I will never be fixed.
I was talking to the pharmacist at work last night about Warfarin. She told me that people normally go on 5 mg and become therapeutic and it's rare for a person to go to 10. To go over 10 mg is nearly unheard of. Well guess who is over ten? This girl. She laughed and said you would think I was a 300 pound man or something with the levels that I am already on.
Maybe I really do need to see and talk to someone because right now I don't want to be around people where I have to pretend that everything is wonderful but at the same time I want to be around people. The time I almost forget about everything is when I'm at work and super busy that I don't have to think about it. That and the fact that there are always so many people around that it just makes my mind go blank. It's great. But maybe I really do need someone to sort out everything up there. I just don't know anymore.
Up next: Monday I get the dreaded ultrasound. Which will tell me if this thing has grown or not. I almost feel like it has because it's becoming more obvious that it's there but who knows.
Yesterday I found out that once again my INR levels are dropping. I feel like it's the stock market, and nothing I do can stop these stupid INR levels to drop. I'm at the highest level of my Warfarin ever and yet the stupid blood work is not giving me the results I need.
Dr. P wants me to see the Dr. C to determine when I can get off the Warfarin because I have "been on it for four months". I informed her that I was going next Monday and she said that should be fine to wait. I told her that my leg has become somewhat hard which it had not been and that it has been hurting. She told me waiting Monday should be okay.
I cried after getting off the phone with Dr. P. I cried (almost) at Pop's. I cried when I came home from work. Basically I have been in the worst mood ever, that even shopping didn't turn, and have been a hot mess ever since Saturday. Or at least that's when I have come to terms this whole funk has occurred.
It's become very difficult to be positive when nothing is going right. I am basically following everything they tell me to do and yet I get opposite results. The weeks that I was at the INR therapeutic levels? I had had a beer the night I would go out AND had a huge salad. Now I'm not doing either and it just keeps crashing. I'm just waiting for the whole thing to burn and for me to once again not be able to move because they can't figure this thing out. That's the point I have gotten to now. I'm expecting that I will never be fixed.
I was talking to the pharmacist at work last night about Warfarin. She told me that people normally go on 5 mg and become therapeutic and it's rare for a person to go to 10. To go over 10 mg is nearly unheard of. Well guess who is over ten? This girl. She laughed and said you would think I was a 300 pound man or something with the levels that I am already on.
Maybe I really do need to see and talk to someone because right now I don't want to be around people where I have to pretend that everything is wonderful but at the same time I want to be around people. The time I almost forget about everything is when I'm at work and super busy that I don't have to think about it. That and the fact that there are always so many people around that it just makes my mind go blank. It's great. But maybe I really do need someone to sort out everything up there. I just don't know anymore.
Up next: Monday I get the dreaded ultrasound. Which will tell me if this thing has grown or not. I almost feel like it has because it's becoming more obvious that it's there but who knows.
Thursday, April 7, 2011
Let's Play A Little Game
Okay so we are going to play a game. You have to choose one thing you don't think you can give up cold turkey. I'll give you a few options.
a. Chocolate
b. Soda
c. Alcohol
d. Salad
If I know people like I think I do, most people would never answer d. However, that is my answer. I have basically given up b and c....only having one of each on special occasions. I'm not a true fan of chocolate; I have to be in the mood for pure chocolate. It's been hard to avoid the Thin Mints but we don't have as many boxes anymore and I'm trying to avoid them. And the rest of candy bars? I've been good.
Salad? Salad is the reason I cried last night; it's the reason that when I get home from work at night I get upset that I can't make a quick salad to eat because it's better then eating all the pasta we have in the fridge. I mean I have to be healthy, and I'm depriving myself of essential nutrients because I'm not having good balanced meals due to my work schedule. So I eat salads to have my vegetables.
Ever since Dr. P told me that my INR levels continue to plummet with no idea why they are doing that, I have been trying my very best to not eat salads, and to continue to be semi good with not eating chocolate. This salad deprivation is what caused another breakdown last night, and what brought me close to tears when I looked in the fridge tonight upon my arrival back home. You see we have a whole new head of lettuce, and all I want is some of it, but I can't. It really is such a tease, and I don't know how much longer I can avoid it.
Truth is we are on month four of this bullshit with no resolution in sight. I have a flight to Washington booked for July, I need some sort of change. The doctors have no reasoning as to why my INR level is not therapeutic like it's supposed to be. They seem to be stumped and I think part of the reason I have been so emotional recently is because there are no answers. I take pills eight times a day, which basically means I'm taking pills every two hours, or what feels like ALL DAY. Not only that but the blood clot had not gotten any smaller since the last ultra sound and I won't know how it looks again till the day after Easter.
I was told at the beginning of this thing that I did not have to change my diet. It's funny we were more concerned about keeping my weight level because of my insides. After I have seemingly gotten that situated for the time being, now I have to worry about what I'm eating because my doctors can't figure out why my INR is not staying where it should be. It honestly boggles my mind. Okay maybe not, I understand they are trying to get it to a certain point and taking away certain food is trying to find said solution. But when I'm not eating "tons of it" like they told me, just small bowls of it to get my veggies in, I don't understand how this is helping me instead of deterring my health.
I remember a while back when I cried to my dad after being told some news, maybe it was the colonoscopy, that I was done with this all. I said it again last night. I'm grateful for being back at work, for being able to interact with people and able to eat and not bed ridden. But when I have to cut on some of the things I love without getting any sort of resolution, I just don't see the point anymore. Taking over ten pills throughout the day? How is that living to a 24 year old? Because I can honestly say I worry more about when I'm taking my next pill and if I took them all then what I am doing. And I'm just completely over it all.
a. Chocolate
b. Soda
c. Alcohol
d. Salad
If I know people like I think I do, most people would never answer d. However, that is my answer. I have basically given up b and c....only having one of each on special occasions. I'm not a true fan of chocolate; I have to be in the mood for pure chocolate. It's been hard to avoid the Thin Mints but we don't have as many boxes anymore and I'm trying to avoid them. And the rest of candy bars? I've been good.
Salad? Salad is the reason I cried last night; it's the reason that when I get home from work at night I get upset that I can't make a quick salad to eat because it's better then eating all the pasta we have in the fridge. I mean I have to be healthy, and I'm depriving myself of essential nutrients because I'm not having good balanced meals due to my work schedule. So I eat salads to have my vegetables.
Ever since Dr. P told me that my INR levels continue to plummet with no idea why they are doing that, I have been trying my very best to not eat salads, and to continue to be semi good with not eating chocolate. This salad deprivation is what caused another breakdown last night, and what brought me close to tears when I looked in the fridge tonight upon my arrival back home. You see we have a whole new head of lettuce, and all I want is some of it, but I can't. It really is such a tease, and I don't know how much longer I can avoid it.
Truth is we are on month four of this bullshit with no resolution in sight. I have a flight to Washington booked for July, I need some sort of change. The doctors have no reasoning as to why my INR level is not therapeutic like it's supposed to be. They seem to be stumped and I think part of the reason I have been so emotional recently is because there are no answers. I take pills eight times a day, which basically means I'm taking pills every two hours, or what feels like ALL DAY. Not only that but the blood clot had not gotten any smaller since the last ultra sound and I won't know how it looks again till the day after Easter.
I was told at the beginning of this thing that I did not have to change my diet. It's funny we were more concerned about keeping my weight level because of my insides. After I have seemingly gotten that situated for the time being, now I have to worry about what I'm eating because my doctors can't figure out why my INR is not staying where it should be. It honestly boggles my mind. Okay maybe not, I understand they are trying to get it to a certain point and taking away certain food is trying to find said solution. But when I'm not eating "tons of it" like they told me, just small bowls of it to get my veggies in, I don't understand how this is helping me instead of deterring my health.
I remember a while back when I cried to my dad after being told some news, maybe it was the colonoscopy, that I was done with this all. I said it again last night. I'm grateful for being back at work, for being able to interact with people and able to eat and not bed ridden. But when I have to cut on some of the things I love without getting any sort of resolution, I just don't see the point anymore. Taking over ten pills throughout the day? How is that living to a 24 year old? Because I can honestly say I worry more about when I'm taking my next pill and if I took them all then what I am doing. And I'm just completely over it all.
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