Just so you know, I'm writing this with a lot of meds pumped in me so it's not very eloquent at all...
If you follow me on this blog and/or even on Facebook, you know that I am very open when it comes to talking about NF and the pain it causes me. I talk a LOT about what pain does to me physically. But I don't really talk about what it does to me psychologically.
Before my surgery last year, I was dealing with this pain with NO medication. Well, I was taking medicine (Tylenol, etc) but it did nothing for me. So when I wrote about pain, it was often with very explicit language. I was about to give up. I was even suicidal. Nothing was helping me.
So now I am on Oxycodone for it. Not every day-- just for the 10-15 days the pain attacks me. It actually HELPS. So when I have a pain spell, I know I will get some relief after I take it, even if it's temporary, so I am definitely NOT in as much distress (though the pain is still astronomical so it IS distressing, but I can handle it much better/calmer!). Perhaps you have noticed that when I write about pain, I don't use such bad language anymore. I think if I didn't have this medication, I'd still write with the same anger and distress that I used to. But while that part of me has calmed down, I have other things I grapple with.
As most of you know, I have graduated May 21 and I am now looking for a job. I'm wondering if I can even handle a new job. I am still have graduate assistantship, so now, and even while I was a student, my supervisor is/has been quite lenient with me. I was able to miss work so I could work on papers, and she is VERY understanding when I call in because I am not well. When I'm not well, it's not because I am sick. It's because I am in pain.
Before my NF pain became out of control, I RARELY, if EVER, called in sick. Even when my pain started to get REALLY bad at the end of my time at my last job (before I went back to school)- I would still be able to crawl out of bed and get there. NOT ANYMORE. I have probably called in (emailed in, actually...) at least four times a month. Sometimes more. All becasue I am in pain and I can't move. Or because I am exhausted because I didn't sleep because of the pain. If I didn't call in, I was almost always late. sometimes it was my fault not planning well for bus, but most times was because I was SO miserable. I can get away with this as a graduate assistant (I mean it's not like I neglect my work- I still always get my work done), but what's goign to happen to me when I get a new job and I have more responsibilities? What the hell is goign to happen when I wake up, practically in tears because pain is through the roof, or still groggy and dizzy from my pain medication...and I can't physically go in? I'm so scared I'm going to get fired.
I feel SO worthless. I wish I were normal. I feel like I should be able to take medicine, get relief and get over it. But I can't. While the medicine works, it makes me unbelievably groggy. Sometimes high. It IS a narcotic after all... I am slightly allergic to it (I've already discussed this with my doctor and I am in no danger taking it given my symptoms) so if I take it at night, I don't sleep because I itch so badly. sometimes ambien doesn't help me sleep because itching keeps me awake despite the medication. I am trying out benedryl now to see if that helps. But anyway.
I am somebody who likes to be up, who likes to be active. Before I had cancer, I would be able to get to work an hour early. When I started getting sick, it turned into 30 minutes early. When I was worse, I would get to work only five minutes early. But I still got there. I was always on time. I liked being there early. The only time I ever really missed work before going to grad school was 1) doctor's appointments 2) having cancer surgery. I have a great immune system- I never got the flu or a fever. Even if I was sniffling or if I had a massive headache, I'd still go in. Even afer BOTH surgeries, I came back to work as soon as I could. I wasn't comfortable, but I wanted to be there That just who I am...or ..WAS.
I have these fears when I talk about pain that people think I'm calling in for something everybody deals with. I feel like I come off as lazy, incompetent and whiny. I feel like I am letting my supervisor down. I feel weak. I feel like I cant' do anything right. I feel like people think "it's just pain- I have pain all the time and I still go to work! you're such a weakling!". FYI This is NOT directed to ANY of you- I am talking about this in the workplace...I am talking about this more on the lines of people who employ me. I JUST WANT TO MAKE THAT CLEAR! I fear this because they hire(d) me expecting me to be there, and then there I go, staying home because I hurt. I just wish I can describe how BAD the pain is. I know there are people who go to work with a migraine. but not to invalidate those with migraines, if I had one, I would still be able to make it into work. But when the tissues deep within my pelvis feel like they are being pulverized.I would much rather sleep.
I think I am slow at applying for jobs because of this fear. I think I'm just going to get fired anyway. GAH. Well, my benedryl, oxy concoction is finally doing me in, so I will sleep, and HOPEFULLY I can go to work tomorrow. Blah.
Yes, I know, I whine a lot.
Anyway, in a few weeks I am getting an MRI of my pelvis. I'm sure nothing will show up, which is SO damn frustrating. I'm supposed to get a nerve entrapment shot to see if that helps at all. Weary to get this done because I'm not in pain all day every day and I don't know if it will even work bc of that. I wish I could just go in and get it done WHEN I'm in pain.
I am also getting my lungs scanned again to make sure the nodules haven't grown/multiplied. I'm not really worried about this. I'll update you all once that time comes!
If you read this, thanks for reading. You guys are always so supportive and caring. I'm grateful for that!
If you follow me on this blog and/or even on Facebook, you know that I am very open when it comes to talking about NF and the pain it causes me. I talk a LOT about what pain does to me physically. But I don't really talk about what it does to me psychologically.
Before my surgery last year, I was dealing with this pain with NO medication. Well, I was taking medicine (Tylenol, etc) but it did nothing for me. So when I wrote about pain, it was often with very explicit language. I was about to give up. I was even suicidal. Nothing was helping me.
So now I am on Oxycodone for it. Not every day-- just for the 10-15 days the pain attacks me. It actually HELPS. So when I have a pain spell, I know I will get some relief after I take it, even if it's temporary, so I am definitely NOT in as much distress (though the pain is still astronomical so it IS distressing, but I can handle it much better/calmer!). Perhaps you have noticed that when I write about pain, I don't use such bad language anymore. I think if I didn't have this medication, I'd still write with the same anger and distress that I used to. But while that part of me has calmed down, I have other things I grapple with.
As most of you know, I have graduated May 21 and I am now looking for a job. I'm wondering if I can even handle a new job. I am still have graduate assistantship, so now, and even while I was a student, my supervisor is/has been quite lenient with me. I was able to miss work so I could work on papers, and she is VERY understanding when I call in because I am not well. When I'm not well, it's not because I am sick. It's because I am in pain.
Before my NF pain became out of control, I RARELY, if EVER, called in sick. Even when my pain started to get REALLY bad at the end of my time at my last job (before I went back to school)- I would still be able to crawl out of bed and get there. NOT ANYMORE. I have probably called in (emailed in, actually...) at least four times a month. Sometimes more. All becasue I am in pain and I can't move. Or because I am exhausted because I didn't sleep because of the pain. If I didn't call in, I was almost always late. sometimes it was my fault not planning well for bus, but most times was because I was SO miserable. I can get away with this as a graduate assistant (I mean it's not like I neglect my work- I still always get my work done), but what's goign to happen to me when I get a new job and I have more responsibilities? What the hell is goign to happen when I wake up, practically in tears because pain is through the roof, or still groggy and dizzy from my pain medication...and I can't physically go in? I'm so scared I'm going to get fired.
I feel SO worthless. I wish I were normal. I feel like I should be able to take medicine, get relief and get over it. But I can't. While the medicine works, it makes me unbelievably groggy. Sometimes high. It IS a narcotic after all... I am slightly allergic to it (I've already discussed this with my doctor and I am in no danger taking it given my symptoms) so if I take it at night, I don't sleep because I itch so badly. sometimes ambien doesn't help me sleep because itching keeps me awake despite the medication. I am trying out benedryl now to see if that helps. But anyway.
I am somebody who likes to be up, who likes to be active. Before I had cancer, I would be able to get to work an hour early. When I started getting sick, it turned into 30 minutes early. When I was worse, I would get to work only five minutes early. But I still got there. I was always on time. I liked being there early. The only time I ever really missed work before going to grad school was 1) doctor's appointments 2) having cancer surgery. I have a great immune system- I never got the flu or a fever. Even if I was sniffling or if I had a massive headache, I'd still go in. Even afer BOTH surgeries, I came back to work as soon as I could. I wasn't comfortable, but I wanted to be there That just who I am...or ..WAS.
I have these fears when I talk about pain that people think I'm calling in for something everybody deals with. I feel like I come off as lazy, incompetent and whiny. I feel like I am letting my supervisor down. I feel weak. I feel like I cant' do anything right. I feel like people think "it's just pain- I have pain all the time and I still go to work! you're such a weakling!". FYI This is NOT directed to ANY of you- I am talking about this in the workplace...I am talking about this more on the lines of people who employ me. I JUST WANT TO MAKE THAT CLEAR! I fear this because they hire(d) me expecting me to be there, and then there I go, staying home because I hurt. I just wish I can describe how BAD the pain is. I know there are people who go to work with a migraine. but not to invalidate those with migraines, if I had one, I would still be able to make it into work. But when the tissues deep within my pelvis feel like they are being pulverized.I would much rather sleep.
I think I am slow at applying for jobs because of this fear. I think I'm just going to get fired anyway. GAH. Well, my benedryl, oxy concoction is finally doing me in, so I will sleep, and HOPEFULLY I can go to work tomorrow. Blah.
Yes, I know, I whine a lot.
Anyway, in a few weeks I am getting an MRI of my pelvis. I'm sure nothing will show up, which is SO damn frustrating. I'm supposed to get a nerve entrapment shot to see if that helps at all. Weary to get this done because I'm not in pain all day every day and I don't know if it will even work bc of that. I wish I could just go in and get it done WHEN I'm in pain.
I am also getting my lungs scanned again to make sure the nodules haven't grown/multiplied. I'm not really worried about this. I'll update you all once that time comes!
If you read this, thanks for reading. You guys are always so supportive and caring. I'm grateful for that!
hi jen, i read this and it was so heartbreaking! esp. your pre and post cancer comparison. keep a cheerful attitude as you seem to always do and wishing you luck! lots of luck!
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I guess because I've known you so long, I know that you would have to be in such extreme amounts of pain to not go to work that I would never even be able to fathom said pain. In fact if I was in your shoes I guarantee I would not be as upbeat as you are. Sure you complain (understandably!) but honestly I don't think that it's over the top AT ALL. In fact I think you are way too hard on yourself, because I for one would be the worst person ever if I was going through what you're going through. You're in my thoughts, love!
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