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.....
loves you <3 well can u get visitor's for those 4 hours?! or watch tv :) maybe I can come keep you company! I know it sucks and I hate seeing my friends go through this :(
ReplyDeleteAnd about the Job thing... most jobs have FMLA and you can take it as needed so instead of using PTO days just take those days as half days (or full ones) haha and it wont go towards your PTO.. they would understand trust me everyone at higherone has something going on and they take time all the time!! :)