12/22 - Well, the joint pain seems to slowly be getting worse. I'm trying to hold off taking Dilaudid. I feel like crying. I went to the doctor today (just a follow up for another procedure I had a few weeks ago), and he wants me to try a higher dose of estrogen. He said it's the same amount that's in a birth control pill. He thinks that will help the pain. Supposedly it's not the Lupron that's causing the pain, but rather my body having no estrogen (or just very little, since I have been taking a small amount as ad-back). Anyway, we'll try this and see what happens. He suggested I do not take the next round of Lupron. I, of course, was not planning on it. I'm having a lot of this cold feeling in the back of my arms today. I took Ibuprofen for the body aches this morning, but I'm still feeling pretty achy...I guess it's partially because I'm having more joint pain.
12/23-28 - I have been really bad writing in here. With the holidays, I've not even had time to think about it. Everything has been same-'ol, same-'ol. Usual pains and aches. There hasn't been anything new to report. I have been really bad at taking my estrogen on a daily basis. I am SO forgetful when it comes to taking pills! Well, the pain killers have a constant reminder...every 4-5 hours, the pain comes back, so I take more. To take one pill a day around the same time...well, that's so hard for me to remember to do!!
Wednesday, December 22, 2010
Week 6 on Lupron | December 15th - 21st
12/15 - Today was the first day that I took Dilaudid during the day. It makes me sleepy, but not to the point that I can't handle staying awake. I'm just a bit slow thinking on it, but not so bad that I can't function correctly. I do not get the euphoria that my doc said I would get. I feel a lot more normal on this than I do on Percocet. By the way he had described Dilaudid, I would have thought otherwise. I felt pretty good today...as long as I take my medicine no less than every 6 hours, then I'm good. I noticed that I get headaches from this medication. So far it hasn't been unbearable...it's easier to deal with than the pain in the rest of my body.
12/16 - I called the pharmacist today to see if I could take Ibuprofen with the Dilaudid for my headaches. He said that was fine. I had a POUNDING headache today, and took an Ibuprofen 600, which did not take the headache away completely. I think I'm going to start taking the Ibuprofen each time I take a Dilaudid (so, every 6 hours). Hopefully that will help.
12/17 - I didn't take the Dilaudid last night so that I could sleep better. It's funny, because I sleep better with pain than the weird things this drug does to my brain while I'm sleeping. I don't know why it doesn't make me that weird during the day, but I am so jumpy and anxious while trying to sleep while on it. I woke up with a pounding headache. I took my drugs and a few hours later the headache started going away. I am so sick of playing this cat and mouse game. I just want to feel normal again.
12/18 - Once again, I woke up with a pounding headache. I hadn't taken the Dilaudid last night before bed again....I'll have to do so tonight. It took a few hours to get the headache to go away completely. I have been noticing this last week or so that I have this random cold feeling in my arms...like someone put ice on them...but it's always on the bottom/back side of my arm, from my elbow down. I think there's something wrong with my nerves. I'm really starting to get scared. There's so much weird stuff going on with my body. I didn't think to write anything earlier this week, because I thought I was just getting sick, but my right lymph node on my neck has been hurting since Tuesday (the 14th). I was expecting that I would be getting a sore throat or a cold of some sort, but nothing has come from it. We'll see what happens with that.
12/16 - I called the pharmacist today to see if I could take Ibuprofen with the Dilaudid for my headaches. He said that was fine. I had a POUNDING headache today, and took an Ibuprofen 600, which did not take the headache away completely. I think I'm going to start taking the Ibuprofen each time I take a Dilaudid (so, every 6 hours). Hopefully that will help.
12/17 - I didn't take the Dilaudid last night so that I could sleep better. It's funny, because I sleep better with pain than the weird things this drug does to my brain while I'm sleeping. I don't know why it doesn't make me that weird during the day, but I am so jumpy and anxious while trying to sleep while on it. I woke up with a pounding headache. I took my drugs and a few hours later the headache started going away. I am so sick of playing this cat and mouse game. I just want to feel normal again.
12/18 - Once again, I woke up with a pounding headache. I hadn't taken the Dilaudid last night before bed again....I'll have to do so tonight. It took a few hours to get the headache to go away completely. I have been noticing this last week or so that I have this random cold feeling in my arms...like someone put ice on them...but it's always on the bottom/back side of my arm, from my elbow down. I think there's something wrong with my nerves. I'm really starting to get scared. There's so much weird stuff going on with my body. I didn't think to write anything earlier this week, because I thought I was just getting sick, but my right lymph node on my neck has been hurting since Tuesday (the 14th). I was expecting that I would be getting a sore throat or a cold of some sort, but nothing has come from it. We'll see what happens with that.
I called a friend of my family, who was my first gynecologist, and has been my mom's for around 25 years. I am just worried about taking so many pain killers for what will be such a long period of time. Especially the type of drugs I'm on. My body is already dependent on it...which is why I'm getting such bad headaches when I don't take the Dilaudid for overnight. My current doctor is so nonchalant about the effects that drugs have. I have shared my concern about being on these, but he just pushes it aside. Anyway, I just wanted to get another professional's opinion. He was very surprised that I was put on Dilaudid. He said it's not something he would have given because of the dependency issue, and that he would have done some hormone therapies before giving pain killers. He explained that testosterone can help relieve joint pain. He also advised me to not take the next round of Lupron. He said that I should consider having a hysterectomy. I explained that I just can't do that right now, because I don't have 6 weeks to recover....I have a 10 month old baby! Anyway, he said that they now can do a hysterectomy laparoscopically and that the recovery time is more like 7-10 days!! WOW!! I had no idea! In this case, I am going to definitely NOT do the next round. I just can't take this pain anymore. I'm also going to talk to my doctor this next week (I have an appointment for Wednesday), about trying the hormone therapy to try and get off these pain killers. I hope this will help.
12/19 - Normal day...well, normal for me these days, which means, pain everywhere, on Dilaudid and Ibuprofen every 4 hours.
12/20 - Interesting day. I woke up with the usual pains and aches. I took my Dilaudid and Ibuprofen. Usually, after 4 hours I start feeling pain again, and will then take more drugs. Although, today was different. I started having the body aches after 4 or 5 hours, but the joint pain wasn't coming back as strong as it normally does. I decided to wait to take more meds to see what happens with the pain. The pain never got bad enough for me to take more Dilaudid. The body aches did, which has always gone away with Ibuprofen, so I took some of that. I CAN'T BELIEVE IT!!! Is my joint pain going away now?!?!?!? Am I on the downhill from here? Oh, how I hope I will have no more joint pain. It's hard to imagine not having constant pain! It's funny how quickly one can forget how easy life was without chronic pain. Like I said...it's not all the way gone, but it's certainly not as bad as it was! I feel like I can do things without wanting to sit and cry from the pain. Yes...it was still that bad...even on Dilaudid.
12/21 - I went a WHOLE DAY without taking Dilaudid! I'm still on the Ibuprofen, because of the body aches, but I had only mild joint pain all day. At around 9pm I started having more pain than I've had all day, but still not enough to take Dilaudid. I'm so happy!! :D Oh, and the lymph node in my neck no longer hurts. I never got a sore throat or a cold or anything, so that was kind of random...but the pain is gone. The headaches I was getting before are also gone...at least in the last two days I haven't gotten any.
NEW SYMPTOMS::
- Cold feeling in my arms
- Major headaches (I think from the Dilaudid)
- More pain in knees
Friday, December 10, 2010
Random Thoughts
I've had a few random thoughts regarding my treatment so far that I wanted to share. For one, I am baffled by the way the side effects come and go so quickly (other than the joint pain and body aches...at least so far, they don't ever go away). As I wrote a couple of weeks ago about my MAJOR memory issues, I haven't had issues with that since. I also have the night sweats/hot flashes very randomly....I really don't get them very often, but I'm not sure what makes that suddenly come on and then not come back for a week.
I'm really scared for how painful my body aches and joint pain are going to become. I have only had them for a couple of weeks, and I'm worried that they're going to get worse. I already can't find medication that works (other than the Darvocet, that's been pulled from the market, so I can't get that anymore), so what am I going to do if and when it gets worse?!
I don't know if I'm going to do the next round. My husband and my mom don't want me to. I see their point in the fact that I'm in a lot of pain, but I also don't want these last 3 months to be a waste!! I haven't spoken to my doctor about that, but it's in the back of my mind. I've read that a lot of people's side effects get worse, which I'm terrified of happening.
Anyway, those are my thoughts for the moment. :)
I'm really scared for how painful my body aches and joint pain are going to become. I have only had them for a couple of weeks, and I'm worried that they're going to get worse. I already can't find medication that works (other than the Darvocet, that's been pulled from the market, so I can't get that anymore), so what am I going to do if and when it gets worse?!
I don't know if I'm going to do the next round. My husband and my mom don't want me to. I see their point in the fact that I'm in a lot of pain, but I also don't want these last 3 months to be a waste!! I haven't spoken to my doctor about that, but it's in the back of my mind. I've read that a lot of people's side effects get worse, which I'm terrified of happening.
Anyway, those are my thoughts for the moment. :)
Week 5 on Lupron | December 8th - 14th
12/8 – Although my reaction to Ultram happened after coming out of a surgical procedure; so it may have had some weird effect because of another drug I may have been on, I just don’t dare take it again. I am going to try and wait to talk to my doctor in two weeks to see what other pain killer I can try. I feel so funny calling all the time….with the request of trying something different.
12/9- I was in too much pain today to wait for another 2 weeks to talk to the doctor. It’s all the usual pain: achy feeling allover my body, with lots of pain in my joints…especially when I use them. I just want to lay in bed and not move a muscle; which of course, I can’t do. I called my doctor, and he has prescribed me Fioricet. I just hope it works….without making me sick. I’m tired of trying more and more drugs. I just want to find something that works without making me ‘loopy’, and that I’m able to function while taking, as well as of course having it take my pain away. We’ll see.
12/10 - I took a Fioricet yesterday evening, and it really seemed to do nothing....well, I guess I shouldn't say that. It did take away my flu-like feeling (the full body aches). But, as for the throbbing joint pain....yeah, it didn't even phase that. I was waking up a lot last night because of the pain. If my knees are bent for a while, then they start throbbing; if I lay on my side, then my shoulder starts throbbing; if I lay on my back, the my toes start throbbing from where the blankets are pressing on them. This morning I took another Fioricet, and again, was having all the same joint pain...but it did again help the body aches. I really didn't want to call him yet AGAIN today. I feel so very embarrassed at calling the doctor all the time asking for more drugs. But, I just feel like I can't be in this pain for another week and a half before I go in to see him again. I decided to call. I, of course, spoke to his nurse, and he called me back a little later. He told me he really didn't know what else to put me on because I've tried everything. He suggested that I try the Fioricet along with Ibuprofen 600. I have tried that this evening, and it seems to make the pain not quite as intense, but it's not gone. We'll see how I feel this weekend. I REALLY hope this works. For one thing, it doesn't make me sick or 'loopy' at all. I feel very normal on it. I really don't want to have to go on something that makes me halfway gone-mentally. Anyway...only time will tell.
12/11 - Well, my pain is mostly gone, as long as I take my meds every 6 hours on the dot. It actually starts coming back after about 5 hours, but I still wait for that 6th hour to take more. I have always been one who if I have a headache, won't take painkillers until I can't stand it anymore. And, here I am taking a LOT of pain medication constantly...and I'm guessing that I'll be doing so for at least 5 more months. I wonder how long it will be before my body gets used to these pain medications, and starts hurting again even while I'm on them. Anyway, I guess at least I am able to control the pain. I just really hope I don't get more health problems because of all this medication I'm on. That really scares me. And, today, I've been on the verge of crying all day. I feel emotionally un-attached to my family, and some suicidal thoughts are creeping in. I completely have freaked out on my husband about leaving a bottle of honey on the table, when my 5 and 3 year olds started playing in it. (They were putting it on some bread, but had it ALL OVER the place). I don't normally do that when I'm not depressed....this is how I acted when I was having depression from the birth control. I mean, yes, it's annoying that he can't just put the honey away, or throw the apple core away that he left on the floor the night before, but would I normally completely come unglued because of that....no. I would mutter to myself how messy he can be, but that's about it. I am so disappointed that I'm getting depression. I truly thought I was out of the woods with that side effect. I am, though, still waiting for it to just suddenly go away. I REALLY hope that I won't have to call my doctor again on Monday asking for more drugs. How can my body keep up with all this crap I'm putting into it. I wish I had known that I was done having kids before I had to start Lupron. I would have had a partial hysterectomy. But, I was still unsure of the future in that department, so of course, that's not the route I wanted to go at the time. I'm so scared that one or all (I have 3) of my daughters will have problems with this. My mom did, and had a hysterectomy in her early 30's. Although, they didn't have as many options back then. I just want my daughters to have normal young lives with no health problems. Honestly, I would NEVER recommend Lupron to anyone who was done having children...no matter her age!! If she's had at least one child, doesn't want more, and has endo, then just get a partial hysterectomy!! There are just SO MANY side effects to this drug.
12/12 - What a day. Woke up depressed...crying most of the day. And, of course, my poor family gets to deal with me. By the evening, I wasn't feeling so bad anymore in the way of depression, anyway. I have still had pain in my hands and arms all afternoon and evening, even while taking the pain killers. I don't know if it is becoming worse (so, if I wasn't on the pain killers, if the pain would be even more; or if my body is just quickly adjusting to the drugs I'm taking, and now needs more). I have only been on this particular concoction for a few days, so I imagine the pain is worsening. I'm glad this day is over. I hope tomorrow is better. I really do not want to go back on anti-depressants, but of course will if the depression is going to stick around.
12/13 - Hurt all day. The usual...joint pain as well as random shooting pain up my arms. I called my doctor to let him know that the Fioricet and Ibuprofen are not working. I don't know why they worked for the first couple of days, and now it's almost like I have taken nothing, but that's what's happened. I think the pain is just getting worse. I kind of feel like a broken record writing this right now!! Anyway, he is at a loss, and doesn't know what else to prescribe. He said he's never had someone have so much pain with the Lupron, to where he isn't able to help manage the pain. He prescribed me Dilaudid. He said it is not something he ever prescribes for this type of pain, as it's a VERY strong pain killer, and is normally prescribed for patients that have just had surgery. He explained to me that it would probably make me more incapacitated from the side effects of it than I am with the pain, but to try it to see. Also, that the side effects I can expect from Dilaudid are dizziness, sleepiness, and euphoria....but that ALL my pain will be gone. I took one tonight and it took all my pain away, but I didn't get the dizziness and euphoria. It made me a bit sleepy, but didn't knock me out like the doctor told me it probably would. Although, I took it and had gone to bed...watched a couple of shows on TV, but didn't fall asleep or anything. So, I am not sure of how it will be when it's the middle of the day and I'm walking around...I may get the dizziness then. Both the doctor and the pharmacist stressed that I do not take this and drive.
12/14 - I was driving all day, and having a lot of pain in my hands from holding the steering wheel. I of course couldn't take the Dilaudid and drive since I'm not familiar with how it is with my body. I took the Fioricet and Ibuprofen every 4 hours, rather than every 6, as it was prescribed. That worked better than every 6 hours, but still I was in pain. I took a Dilaudid at night when I went to bed. It works really well taking the pain away. I do seem to have weird dreams on this, though. I can't remember what they are, but I will wake up not long after I have been asleep (maybe an hour), and I'll have that feeling like I just got jolted awake because of my dream. I have a hard time falling back asleep after that, too. So weird.
NEW SYMPTOMS::
12/9- I was in too much pain today to wait for another 2 weeks to talk to the doctor. It’s all the usual pain: achy feeling allover my body, with lots of pain in my joints…especially when I use them. I just want to lay in bed and not move a muscle; which of course, I can’t do. I called my doctor, and he has prescribed me Fioricet. I just hope it works….without making me sick. I’m tired of trying more and more drugs. I just want to find something that works without making me ‘loopy’, and that I’m able to function while taking, as well as of course having it take my pain away. We’ll see.
12/10 - I took a Fioricet yesterday evening, and it really seemed to do nothing....well, I guess I shouldn't say that. It did take away my flu-like feeling (the full body aches). But, as for the throbbing joint pain....yeah, it didn't even phase that. I was waking up a lot last night because of the pain. If my knees are bent for a while, then they start throbbing; if I lay on my side, then my shoulder starts throbbing; if I lay on my back, the my toes start throbbing from where the blankets are pressing on them. This morning I took another Fioricet, and again, was having all the same joint pain...but it did again help the body aches. I really didn't want to call him yet AGAIN today. I feel so very embarrassed at calling the doctor all the time asking for more drugs. But, I just feel like I can't be in this pain for another week and a half before I go in to see him again. I decided to call. I, of course, spoke to his nurse, and he called me back a little later. He told me he really didn't know what else to put me on because I've tried everything. He suggested that I try the Fioricet along with Ibuprofen 600. I have tried that this evening, and it seems to make the pain not quite as intense, but it's not gone. We'll see how I feel this weekend. I REALLY hope this works. For one thing, it doesn't make me sick or 'loopy' at all. I feel very normal on it. I really don't want to have to go on something that makes me halfway gone-mentally. Anyway...only time will tell.
12/11 - Well, my pain is mostly gone, as long as I take my meds every 6 hours on the dot. It actually starts coming back after about 5 hours, but I still wait for that 6th hour to take more. I have always been one who if I have a headache, won't take painkillers until I can't stand it anymore. And, here I am taking a LOT of pain medication constantly...and I'm guessing that I'll be doing so for at least 5 more months. I wonder how long it will be before my body gets used to these pain medications, and starts hurting again even while I'm on them. Anyway, I guess at least I am able to control the pain. I just really hope I don't get more health problems because of all this medication I'm on. That really scares me. And, today, I've been on the verge of crying all day. I feel emotionally un-attached to my family, and some suicidal thoughts are creeping in. I completely have freaked out on my husband about leaving a bottle of honey on the table, when my 5 and 3 year olds started playing in it. (They were putting it on some bread, but had it ALL OVER the place). I don't normally do that when I'm not depressed....this is how I acted when I was having depression from the birth control. I mean, yes, it's annoying that he can't just put the honey away, or throw the apple core away that he left on the floor the night before, but would I normally completely come unglued because of that....no. I would mutter to myself how messy he can be, but that's about it. I am so disappointed that I'm getting depression. I truly thought I was out of the woods with that side effect. I am, though, still waiting for it to just suddenly go away. I REALLY hope that I won't have to call my doctor again on Monday asking for more drugs. How can my body keep up with all this crap I'm putting into it. I wish I had known that I was done having kids before I had to start Lupron. I would have had a partial hysterectomy. But, I was still unsure of the future in that department, so of course, that's not the route I wanted to go at the time. I'm so scared that one or all (I have 3) of my daughters will have problems with this. My mom did, and had a hysterectomy in her early 30's. Although, they didn't have as many options back then. I just want my daughters to have normal young lives with no health problems. Honestly, I would NEVER recommend Lupron to anyone who was done having children...no matter her age!! If she's had at least one child, doesn't want more, and has endo, then just get a partial hysterectomy!! There are just SO MANY side effects to this drug.
12/12 - What a day. Woke up depressed...crying most of the day. And, of course, my poor family gets to deal with me. By the evening, I wasn't feeling so bad anymore in the way of depression, anyway. I have still had pain in my hands and arms all afternoon and evening, even while taking the pain killers. I don't know if it is becoming worse (so, if I wasn't on the pain killers, if the pain would be even more; or if my body is just quickly adjusting to the drugs I'm taking, and now needs more). I have only been on this particular concoction for a few days, so I imagine the pain is worsening. I'm glad this day is over. I hope tomorrow is better. I really do not want to go back on anti-depressants, but of course will if the depression is going to stick around.
12/13 - Hurt all day. The usual...joint pain as well as random shooting pain up my arms. I called my doctor to let him know that the Fioricet and Ibuprofen are not working. I don't know why they worked for the first couple of days, and now it's almost like I have taken nothing, but that's what's happened. I think the pain is just getting worse. I kind of feel like a broken record writing this right now!! Anyway, he is at a loss, and doesn't know what else to prescribe. He said he's never had someone have so much pain with the Lupron, to where he isn't able to help manage the pain. He prescribed me Dilaudid. He said it is not something he ever prescribes for this type of pain, as it's a VERY strong pain killer, and is normally prescribed for patients that have just had surgery. He explained to me that it would probably make me more incapacitated from the side effects of it than I am with the pain, but to try it to see. Also, that the side effects I can expect from Dilaudid are dizziness, sleepiness, and euphoria....but that ALL my pain will be gone. I took one tonight and it took all my pain away, but I didn't get the dizziness and euphoria. It made me a bit sleepy, but didn't knock me out like the doctor told me it probably would. Although, I took it and had gone to bed...watched a couple of shows on TV, but didn't fall asleep or anything. So, I am not sure of how it will be when it's the middle of the day and I'm walking around...I may get the dizziness then. Both the doctor and the pharmacist stressed that I do not take this and drive.
12/14 - I was driving all day, and having a lot of pain in my hands from holding the steering wheel. I of course couldn't take the Dilaudid and drive since I'm not familiar with how it is with my body. I took the Fioricet and Ibuprofen every 4 hours, rather than every 6, as it was prescribed. That worked better than every 6 hours, but still I was in pain. I took a Dilaudid at night when I went to bed. It works really well taking the pain away. I do seem to have weird dreams on this, though. I can't remember what they are, but I will wake up not long after I have been asleep (maybe an hour), and I'll have that feeling like I just got jolted awake because of my dream. I have a hard time falling back asleep after that, too. So weird.
NEW SYMPTOMS::
- I have had a VERY painful shooting pain down the back of my left leg this evening. I did have shooting pains in my arms a couple of times a few weeks ago, but never again, and not this intense. I hope it's just a fluke and goes away. The pain killers didn't do a thing for this pain.
- I also felt very weepy this morning (12/10). That hasn't really happened yet, other than one day...only a few days after I first got the injection. My period would be due in the next 2-5 days normally, so I'm not sure if it has to do with that.
- Depression
Week 4 on Lupron | December 1st-7th
12/1 – I went to the doctor today. He seemed surprised by how badly my joints are hurting, and by the fact that it’s my whole body. I felt funny asking for narcotics, but I just can’t function with all the pain. He gave me more Darvocet. Anyway, the pain actually wasn’t too bad for most of today. That is, until I went to Costco and was pushing my heavy cart around, then I really started feeling it. I took some of my pain killers at around 6:00. By 10:00, I was in a lot of pain again. It started shooting up my arms; that’s a different type of pain than it was before. I had my husband massage my arms, and that really helped.
The new side effect that has come along today, is dizziness. At around 4:00 I started feeling dizzy; almost buzzed, really. It was weird. The more I moved, the dizzier I got. Twice I almost fell right over backwards. I absolutely could not catch my balance. I happened to be standing next to my my car the first time and my baby’s crib the 2nd time. Luckily I wasn’t in an open area with the baby in my arms. My gosh! Sometimes these side effects really make me scared that I may be an unfit mother….like falling over with a child in my arms.
Another side effect that I’ve had for a couple of weeks now, but I think I forgot to write about is memory loss. I have always been a bit of the forgetful side, but this is just incredibly worse. It’s weird because it comes and goes. I will be doing pretty good with it, and then I start forgetting everything. It’s actually hard to explain. It’s not so much that I’m forgetting to do little things here and there; it’s that I feel like I’m about to forget who I am. I will feel like any second I could just forget who my children are. I’ve thought about a close friend of mine, and honestly not been able to remember if she had 2 or 3 kids. I was pretty sure it was two, but really wasn’t sure if I was just forgetting one. It’s as if I’m standing on a tightrope, just waiting for the inevitable to happen. That’s the best way I can describe the feeling I have when my memory is really bad. I have cried a time or two because of it. What in the world would I do if I had no short term memory?! I couldn’t stay with my kids alone. When I’m having a ‘memory episode’, I guess I’ll call it, I have to sit and think about if my baby is just in the other room playing, or if she’s asleep. I worry that I’ve forgotten to keep an eye on her. What a terrible feeling.
12/2 – Today all the symptoms are pretty much the same, and I haven’t had any new ones. I’m sleepy as can be, which I’ve actually kind of just gotten used to. Joint pain was there, and again I had shooting pain up my right arm. I took a Darvocet at 7:30 this morning, and haven’t taken another yet. I’m really trying to take as few as possible, so I wait until the pain is unbearable. Sometimes a random joint will just start THROBBING. It will absolutely just stop me in my tracks. Even with the pain I’m having; I would say the worse side effect is the memory loss. I can deal with the pain (as long as my husband will let me complain to him about it here and there), but the mental issues I just can’t take! I do not take for granted that I haven’t gotten depression from this. I do not forget that things could be worse, and that they possibly could change at any time.
12/3 – Funny story. I went to get my prescription for Darvocet filled at Wal Mart. I actually never get them filled there…I usually go to my local Smith’s, but I needed to do a little shopping, so I thought I’d do it all at once. Not to mention, that I was in pain, and took my last Darvocet last night. So, I stand in the line for around 10 minutes (might I add, I had all 3 of my kids with me…who are 5 and under). I finally get up to the counter, and the guy tells me that my driver’s license is expired, so I can’t fill the prescription. (It expired 2 weeks ago…I didn’t even realize it). So, I call my husband, who was just getting off work and heading to a study group for the rest of the day/evening. He said he would meet me there so I could get the prescription filled. I’m really in lots of pain by this time…so much walking around. Not only that, I’m as tired as could be. Anyway, so he gets there, and we again stand in line to get the prescription filled. It was a different person this time, and she looks at the script, and immediately tells me that this drug has been recalled because it gives heart problems. I was so frustrated that the first guy didn’t tell me that! I called my doctor’s office, and it was closed….they close up at 2:00 on Fridays. So, I guess I’ll wait until Monday. I had some Percocet 5 from a previous surgery, so I took half of one of those. It really didn’t do much for the pain. I mean….it did take away the achy pain in my bones….that flu-like pain I have. But, as for the joint pain that hurts so much when I move….it didn’t take that away.
12/4 – I started taking half a percocet with Ibuprofen 800 today. That’s the best concoction so far; that is, other than just a Darvocet. Although, it still doesn’t work 100%. I will still have random shooting pains from different joints, as well as joints starting to throb for a while, and then stop. I’m not sure what’s going on with them. It worries me. Could it be permanent? Of course something bad is happening with them, or they wouldn’t hurt….right?
12/6- I took my prescription back to the doctor because my new concoction I created was okay the first time, and then it started making me sick. He wrote me a new prescription for Ultram. I took one tonight, and it gave me a headache, but it wasn’t horrible. We’ll see how it keeps working.
12/7 – I had a small surgical procedure today, and when I got home, I took an Ultram. I was very sick all day with a pounding headache and I was VERY nauseated. I figured it was just from the anesthesia. So, in the evening, I took another Utram, hoping it would take my headache away, but it made it worse, as well as made me vomit. When I was done, my stomach felt a lot better, and my head progressively got better throughout the night. I will never take one of those again!!
The new side effect that has come along today, is dizziness. At around 4:00 I started feeling dizzy; almost buzzed, really. It was weird. The more I moved, the dizzier I got. Twice I almost fell right over backwards. I absolutely could not catch my balance. I happened to be standing next to my my car the first time and my baby’s crib the 2nd time. Luckily I wasn’t in an open area with the baby in my arms. My gosh! Sometimes these side effects really make me scared that I may be an unfit mother….like falling over with a child in my arms.
Another side effect that I’ve had for a couple of weeks now, but I think I forgot to write about is memory loss. I have always been a bit of the forgetful side, but this is just incredibly worse. It’s weird because it comes and goes. I will be doing pretty good with it, and then I start forgetting everything. It’s actually hard to explain. It’s not so much that I’m forgetting to do little things here and there; it’s that I feel like I’m about to forget who I am. I will feel like any second I could just forget who my children are. I’ve thought about a close friend of mine, and honestly not been able to remember if she had 2 or 3 kids. I was pretty sure it was two, but really wasn’t sure if I was just forgetting one. It’s as if I’m standing on a tightrope, just waiting for the inevitable to happen. That’s the best way I can describe the feeling I have when my memory is really bad. I have cried a time or two because of it. What in the world would I do if I had no short term memory?! I couldn’t stay with my kids alone. When I’m having a ‘memory episode’, I guess I’ll call it, I have to sit and think about if my baby is just in the other room playing, or if she’s asleep. I worry that I’ve forgotten to keep an eye on her. What a terrible feeling.
12/2 – Today all the symptoms are pretty much the same, and I haven’t had any new ones. I’m sleepy as can be, which I’ve actually kind of just gotten used to. Joint pain was there, and again I had shooting pain up my right arm. I took a Darvocet at 7:30 this morning, and haven’t taken another yet. I’m really trying to take as few as possible, so I wait until the pain is unbearable. Sometimes a random joint will just start THROBBING. It will absolutely just stop me in my tracks. Even with the pain I’m having; I would say the worse side effect is the memory loss. I can deal with the pain (as long as my husband will let me complain to him about it here and there), but the mental issues I just can’t take! I do not take for granted that I haven’t gotten depression from this. I do not forget that things could be worse, and that they possibly could change at any time.
12/3 – Funny story. I went to get my prescription for Darvocet filled at Wal Mart. I actually never get them filled there…I usually go to my local Smith’s, but I needed to do a little shopping, so I thought I’d do it all at once. Not to mention, that I was in pain, and took my last Darvocet last night. So, I stand in the line for around 10 minutes (might I add, I had all 3 of my kids with me…who are 5 and under). I finally get up to the counter, and the guy tells me that my driver’s license is expired, so I can’t fill the prescription. (It expired 2 weeks ago…I didn’t even realize it). So, I call my husband, who was just getting off work and heading to a study group for the rest of the day/evening. He said he would meet me there so I could get the prescription filled. I’m really in lots of pain by this time…so much walking around. Not only that, I’m as tired as could be. Anyway, so he gets there, and we again stand in line to get the prescription filled. It was a different person this time, and she looks at the script, and immediately tells me that this drug has been recalled because it gives heart problems. I was so frustrated that the first guy didn’t tell me that! I called my doctor’s office, and it was closed….they close up at 2:00 on Fridays. So, I guess I’ll wait until Monday. I had some Percocet 5 from a previous surgery, so I took half of one of those. It really didn’t do much for the pain. I mean….it did take away the achy pain in my bones….that flu-like pain I have. But, as for the joint pain that hurts so much when I move….it didn’t take that away.
12/4 – I started taking half a percocet with Ibuprofen 800 today. That’s the best concoction so far; that is, other than just a Darvocet. Although, it still doesn’t work 100%. I will still have random shooting pains from different joints, as well as joints starting to throb for a while, and then stop. I’m not sure what’s going on with them. It worries me. Could it be permanent? Of course something bad is happening with them, or they wouldn’t hurt….right?
12/6- I took my prescription back to the doctor because my new concoction I created was okay the first time, and then it started making me sick. He wrote me a new prescription for Ultram. I took one tonight, and it gave me a headache, but it wasn’t horrible. We’ll see how it keeps working.
12/7 – I had a small surgical procedure today, and when I got home, I took an Ultram. I was very sick all day with a pounding headache and I was VERY nauseated. I figured it was just from the anesthesia. So, in the evening, I took another Utram, hoping it would take my headache away, but it made it worse, as well as made me vomit. When I was done, my stomach felt a lot better, and my head progressively got better throughout the night. I will never take one of those again!!
Week 3 on Lupron | November 23-30th
The joint pain is getting worse. I take pain killers each morning and night, and sometimes I also have to take more in the middle of the day. (Advil and Aleve work the best. When I take Tylenol, it doesn’t help the pain as much, and that’s usually when I have to take more in the day).
I also have started getting headaches, as well as nausea. The headaches are bad enough that I would take pain killers for them, if I weren’t already for the joint pain. And, the nausea comes and goes. It’s not terrible, though. Morning sickness was much worse!!
I have to be honest. For me, I would ANY DAY take the aches and pains that I’m suffering from now than having the depression. I truly feel blessed that I’m only having pain and no mental side effects.
___
11/30 – I am feeling tremendously disappointed in the fact that my joint pain is worsening. Each day it seems to worsen, and the Advil isn’t working anymore. I took an Ibuprofen 800 last night and this morning. It seems to help the pain when I’m not moving, but as soon as I’m moving around, the pain is still there. (the pain is there even when I’m not moving my joints…it just worsens a lot when I am moving). I decided this afternoon to take a Darvocet that I had left over from my surgery. It has helped. Again, the pain isn’t 100% gone when I’m moving, but it’s almost gone. I want to cry. I do not want to become dependent on narcotics, which will happen if I am taking them for at least the remaining 5 1/2 months left of this treatment. I am so scared and truly don’t know what to do from here. I have so much to do…I have a baby, and a job, which requires me to use the computer for hours at a time….I’m in constant pain. My joints are throbbing. I don’t want to pick up my baby because it hurts. I can’t live like that. I have to do something about the pain. But, again, I don’t want to become dependent on the drug. What to do?
I also have started getting headaches, as well as nausea. The headaches are bad enough that I would take pain killers for them, if I weren’t already for the joint pain. And, the nausea comes and goes. It’s not terrible, though. Morning sickness was much worse!!
I have to be honest. For me, I would ANY DAY take the aches and pains that I’m suffering from now than having the depression. I truly feel blessed that I’m only having pain and no mental side effects.
___
11/30 – I am feeling tremendously disappointed in the fact that my joint pain is worsening. Each day it seems to worsen, and the Advil isn’t working anymore. I took an Ibuprofen 800 last night and this morning. It seems to help the pain when I’m not moving, but as soon as I’m moving around, the pain is still there. (the pain is there even when I’m not moving my joints…it just worsens a lot when I am moving). I decided this afternoon to take a Darvocet that I had left over from my surgery. It has helped. Again, the pain isn’t 100% gone when I’m moving, but it’s almost gone. I want to cry. I do not want to become dependent on narcotics, which will happen if I am taking them for at least the remaining 5 1/2 months left of this treatment. I am so scared and truly don’t know what to do from here. I have so much to do…I have a baby, and a job, which requires me to use the computer for hours at a time….I’m in constant pain. My joints are throbbing. I don’t want to pick up my baby because it hurts. I can’t live like that. I have to do something about the pain. But, again, I don’t want to become dependent on the drug. What to do?
Day 11 on Lupron | November 20th
I still had the tingling and numbness today, but only for a few hours in the morning. I’m glad it’s gone. It was really starting to freak me out.
Day 10 on Lupron | November 19th
When I first woke up, the numbness and tingling were gone, but soon came back. I decided to call the doctor. I of course, just spoke to the nurse, who was certain it was a nerve. I explained that I didn’t think it was, being that I was having it on one whole side of my body…and just my extremities. I also explained that the Lupron information told me to call the doctor if I was experiencing this side effect. She finally told me that she’d try to get a hold of the doctor today and call me back. Anyway, at about 2:00 in the afternoon, I get a call back from this nurse. She told me she spoke to the doctor, and he told me to go to the E.R., as it could be a beginning sign of a stroke. So, I went. It was a complete joke. I didn’t get to speak to a doctor while I was there….I just got a PA. She also was giving me the nerve talk, but told me it didn’t make sense if it were a nerve. I told her that my doctor was concerned it was a pre-stroke sign. She LAUGHED!! As she was shaking her head, she told me that I was not having a stroke. She said, ‘You’re not slurring your speech, and your face is moving on both sides, so you’re fine’. She went on to tell me she would order some blood work to see if I was low in electrolytes. After she left and I was sitting there taking it all in, I started getting upset. A nurse walked by, and asked if I was cold. I explained to her what just happened, and that I wanted to leave. She told me that was fine, but if I had any worsening symptoms that I needed to come back immediately. I laughed and said, ‘yeah, so she can laugh at me and check my electrolyte count again?!’. She assured me that more would be done if I had to come back. I left. I was FUMING. My doctor sent me there because he saw reason to be concerned. Then a stupid PA laughs at me, and makes me feel like an idiot for being there, and does nothing. I called my husband and told him that if I had a stroke, whether I lived or died, that he was to sue that hospital!! Anyway, hopefully it really is nothing.
Day 9 on Lupron | November 18th
This evening I started feeling tingling and numbness in my left arm & hand and leg & foot at around 5:00. I was pretty worried about it. I know that numbness on one side of the body can be a sign of a stroke, and it’s also one of those side effects that in the Lupron patient information packet that tells you to IMMEDIATELY call the doctor if you have. I was in a hurry, getting ready to go to a school function at my daughter’s school, so I just thought I’d wait it out and see what happens. I had it all evening, but didn’t want to bother my doctor at night, so I thought I’d see if I still had it in the morning. The numbness didn’t completely take sensation out of my arm and leg, it was just slight. I figured if things got worse, I’d call the doc.
A new side effect I started having today was some pain in my joints. It’s not very bad at all, but it’s there.
A new side effect I started having today was some pain in my joints. It’s not very bad at all, but it’s there.
Day 8 on Lupron | November 17th
I went to the doctor today (nothing pertaining to Lupron). When he came in the room, asked how I was doing...wondering about the Lupron side effects. (He was very aware of my being scared to go on it, and the fact that I was mortified of getting depression again). I told him how COMPLETELY surprised I was at how well I was doing, and that I had no signs of depression yet. He was happy to hear it. He then said, ‘You seem very relaxed’. I was shocked that he noticed that. I have been feeling relaxed and just not as anxious as normal. Normally, when my kids do things that upset me, I’ll yell at them. But, lately, I noticed that I just don’t have the urge to yell at them over everything. I don’t feel upset very often. I told him this, and also told him that I was surprised he noticed that….that I didn’t know it was noticeable to others. He told me that usually when I’m there I’m on edge. I started laughing and embarrassed, I disagreed with him. He said, ‘Yeah, you are’. I was pretty embarrassed that even the doctor could see the difference! I guess my family must really be able to see it. He was quite dumbfounded as to how my body seems to be reacting in a good way to having my estrogen turned off. I suggested that after this is over we look at my hormone levels again. (I did so just a month or so before I got pregnant this last time. The levels were all in the normal range.) He reminded me of the normality of my hormone levels and said that we could look at some different options, but that we can’t just leave my estrogen turned off long-term. He laughed and told me that maybe menopause will be something I can look forward to. He said something to the effect that my body is reacting badly to having normal hormones. So weird. I didn’t ask what the options were that we would look at in the future….I’ll just wait and see when the time comes.
Day 4 on Lupron | November 12th
I went to sleep at 7:30 last night, and slept until 6:30 this morning. (I could have slept longer…that’s just when I got woken up by my baby). I have felt sleepy all day again. I had no other symptoms today.
Day 3 on Lupron | November 11th
The craziness may have began. I was laying in my bed, playing with my baby, when all of a sudden, out of no where, I started to cry. I was not sad, mad, depressed, or upset, but I was crying!! It was the weirdest thing.
I have felt like a zombie all day. I am so sleepy that I can’t even think straight. I took a nap for a couple of hours in the afternoon, too. I went to bed at 9:00 last night…slept until 6:30. I feel like I have taken a strong sleeping pill and am walking around completely groggy. I do not like this! I just want to sleep and do nothing. Actually, I don’t feel like doing nothing…I don’t feel physically exhausted or fatigued, just sleepy. I actually felt like cleaning all day.
No hot flashes today, nor chills.
I have felt like a zombie all day. I am so sleepy that I can’t even think straight. I took a nap for a couple of hours in the afternoon, too. I went to bed at 9:00 last night…slept until 6:30. I feel like I have taken a strong sleeping pill and am walking around completely groggy. I do not like this! I just want to sleep and do nothing. Actually, I don’t feel like doing nothing…I don’t feel physically exhausted or fatigued, just sleepy. I actually felt like cleaning all day.
No hot flashes today, nor chills.
Day 2 on Lupron | November 10th
So far so good on the Lupron. My doctor did say it could take anywhere between 24-72 hours for side effects to start showing up, but I’m glad they haven’t yet. I only had hot flashes for a couple of hours yesterday, and then I was okay. I had chills all evening, though. I have had no symptoms of depression, THANK GOODNESS.
Day 1 on Lupron | November 9th
Well, I started the Lupron shot today. I got the shot at 9:00 in the morning. At around noon, I started feeling extremely tired/sleepy. I am not sure that it’s directly related to Lupron, but that is something I noticed. I also started getting hot flashes and chills at around 4:00. I guess I should also specify that I did the 3 month dose. So, I’ll have another injection in 3 months, and should be done with the therapy after that.
Because my mother got osteoporosis in her 40′s, I also asked my doctor to do the add-back therapy. He prescribed me Premarin 0.3. I also took that this evening, and seemed to get more sleepy after it, too.
Because my mother got osteoporosis in her 40′s, I also asked my doctor to do the add-back therapy. He prescribed me Premarin 0.3. I also took that this evening, and seemed to get more sleepy after it, too.
My History That's Led Me Here
Well, I guess I should start in the beginning, so there’s a basis to all of this. I am 27 years old. I had endometriosis from the very beginning….so since I was 13. I had been put on birth control to see if that would help the symptoms of endo (the extreme cramping and super heavy flow). It didn’t help in the least, so I underwent a laparascopic surgery, which confirmed the endometriosis. I also had cysts on my ovaries. Of course, it was all cleaned out, and I was to stay on the birth control. I always had troubles with birth control. Usually it would make me sick to my stomach, so I would end up switching brands. I think I have tried them all. I never had problems with endometriosis again, that is, until now. I feel very fortunate that it didn’t come back for 12 years, and I have been able to lead a normal and pain-free life. I have 3 beautiful children, who I had absolutely no problems conceiving. After my last baby, who was born almost exactly 9 months ago, I started having a lot of pain associated with my periods. It took me a while to figure it out, because I had a c-section, in which I had a hard recovery from. (In the internal incision, a nerve was tied into the ending on the sutures. I unfortunately had to wait it out until the sutures dissolved, which takes 4 weeks. I had pain for months from that. I was very worried about having permanent nerve damage, but thankfully everything is back to normal). Anyway, because of the pain from the c-section, I thought that my periods were painful from that, at first. I also had cramping in the middle of the month, when I was ovulating. Another symptom I had this time that I don’t remember having when I was a teenager, was that I had irritable bowl syndrome, which is commonly associated with endo.
I should also add that I have suffered from depression for years. I had it when I was a teen, but didn’t realize that’s what it was. After my 2nd daughter was born (almost 4 years ago), the depression got very bad, and I finally called the doctor about it. I was put on Zoloft. I remember the day it kicked in. I think it took 4 weeks, but was a dramatic difference once it did. I was on that for over a year, when I spoke to my doctor about my lack of libido, and he switched my anti-depressants to Wellbutrin, as one of common side effects of that is an increase in libido. I didn’t see a dramtic difference. During the time I was on Zoloft, once in a while it didn’t seem to work; and when it wasn’t working, the depression symptoms were much worse than before. I started getting suicidal. I hadn’t told my doctor this, as I was very embarrassed by that fact. I’m not sure if the Wellbutrin made things worse, or if my depression was just getting worse, but each time that the happy pills wouldn’t work, I would get more and more suicidal. The last time I had an ‘episode’, I was very, very close to doing it. I think I may have, had my husband not come home at that time. Anyway, after having my last baby, for one reason or another, I didn’t ever make it in to the doctor to get back onto some birth control. I actually had several appointments made, but things just kept coming up that I would have to re-schedule. When my baby was 2 months old, I had a pregnancy scare. I stopped taking the Wellbutrin immediately, and waited it out. Luckily, there was no pregnancy!! During that time, I was expecting myself to become depressed, but it never happened! I was happy and felt NORMAL. Something that was so new to me. I still had some anxiety, but nothing that would make me want to be medicated over. I firmly believe it was the birth control that was giving me the depression for all these years. This was such a breakthrough for me, and such a blessing to find out!
So, back to the endo. My doctor wanted me to try going on Lupron before having surgery for the endo. Being that one of the side effects of Lupron is depression, I was just sure that I would get it, and that it would be worse than ever before, being that my estrogen would be shut off (or at least almost so). I was unwilling to have depression again without knowing for certain that I even needed the medication. I opted to have surgery to see if it really was endo; and it was. I also had a complex cyst on one of my ovaries. I started Lupron on November 9, 2010. I couldn’t have been more scared to start this medication. I had researched online the side effects, and read reviews of other people who had been on it. It sounded like pure hell. That’s what my husband and I planned for….6 months of hell. I decided to do the Lupron rather than birth control because I couldn’t give myself depression again. I knew without a doubt that birth control would do that. I was quite certain Lupron would too, but I could see an end to that road…so it’s the one I took.
Anyway, that’s my story of why I’m on this drug. I will update sometimes daily, if there are any events, and if not, I’ll update weekly. Happy reading!
I should also add that I have suffered from depression for years. I had it when I was a teen, but didn’t realize that’s what it was. After my 2nd daughter was born (almost 4 years ago), the depression got very bad, and I finally called the doctor about it. I was put on Zoloft. I remember the day it kicked in. I think it took 4 weeks, but was a dramatic difference once it did. I was on that for over a year, when I spoke to my doctor about my lack of libido, and he switched my anti-depressants to Wellbutrin, as one of common side effects of that is an increase in libido. I didn’t see a dramtic difference. During the time I was on Zoloft, once in a while it didn’t seem to work; and when it wasn’t working, the depression symptoms were much worse than before. I started getting suicidal. I hadn’t told my doctor this, as I was very embarrassed by that fact. I’m not sure if the Wellbutrin made things worse, or if my depression was just getting worse, but each time that the happy pills wouldn’t work, I would get more and more suicidal. The last time I had an ‘episode’, I was very, very close to doing it. I think I may have, had my husband not come home at that time. Anyway, after having my last baby, for one reason or another, I didn’t ever make it in to the doctor to get back onto some birth control. I actually had several appointments made, but things just kept coming up that I would have to re-schedule. When my baby was 2 months old, I had a pregnancy scare. I stopped taking the Wellbutrin immediately, and waited it out. Luckily, there was no pregnancy!! During that time, I was expecting myself to become depressed, but it never happened! I was happy and felt NORMAL. Something that was so new to me. I still had some anxiety, but nothing that would make me want to be medicated over. I firmly believe it was the birth control that was giving me the depression for all these years. This was such a breakthrough for me, and such a blessing to find out!
So, back to the endo. My doctor wanted me to try going on Lupron before having surgery for the endo. Being that one of the side effects of Lupron is depression, I was just sure that I would get it, and that it would be worse than ever before, being that my estrogen would be shut off (or at least almost so). I was unwilling to have depression again without knowing for certain that I even needed the medication. I opted to have surgery to see if it really was endo; and it was. I also had a complex cyst on one of my ovaries. I started Lupron on November 9, 2010. I couldn’t have been more scared to start this medication. I had researched online the side effects, and read reviews of other people who had been on it. It sounded like pure hell. That’s what my husband and I planned for….6 months of hell. I decided to do the Lupron rather than birth control because I couldn’t give myself depression again. I knew without a doubt that birth control would do that. I was quite certain Lupron would too, but I could see an end to that road…so it’s the one I took.
Anyway, that’s my story of why I’m on this drug. I will update sometimes daily, if there are any events, and if not, I’ll update weekly. Happy reading!
Starting a Bit Late
So, I originally started this blog on Wordpress; although, because I'm very unfamiliar with that program, I'm really not able to figure out how to get it to show up on search engines. Anyway, so I decided to re-post this blog here on Blogger. The original name (on Wordpress) was My Lupron Journey, but I found out when I was creating the blog over here that someone else had that same name already from a while back, only with the blogger address. So, I re-named it to My Lupron Journal. Anyway, all the posting dates will be the same for the first month, since I'm re-posting them all over here. But, I'll write the dates that it actually happened in the post. And here we go....
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