The last two days have been like an awful, never ending nightmare. While I type this my grandma is in the hospital dying. I wish I could say she was fighting for her life but she's not. I know that she is ready to go. She has been saying for a long time that she is ready to go I just didn't think that it would be so soon. I've been trying to prepare myself for this but I really don't think that there is any way to truly prepare yourself to loose someone that you love so much.
I got a text message from my mom Friday evening that she had fallen and they were on the way to the ER. They were pretty sure she had broken her hip. Once there it was confirmed that she had. She was completely coherent. At some point between Friday night and late last night she had a stroke and a heart attack. They didn't realize that she had a stroke until quite a while later because they had her so sedated on morphine for the pain that they didn't see the signs, not that it would have made much of a difference. She wasn't in good health to begin with and it was a significant stroke. After the stroke she had a heart attack at some point although they couldn't tell us exactly when.
The team of doctors came in today and basically said that although she isn't on life support, the medications that they were giving her to support her blood pressure and oxygen they were forcing was keeping her alive, so it was kind of like life support. They said they could continue that for days, weeks, months, but more than half her heart was dead and she would be bed ridden the rest of her life and need constant care. My grandma was a proud woman and would not have wanted that. She told us several times she didn't want that. Hell, she told us for the last 10 years that she was ready to die.
So my grandpa (actually step-grandpa), aunt, and mother made the decision to stop treatment at the recommendation of the doctors. It was the hardest decision that they/we have ever had to make and I am reliving it over and over in my head. So now it could be days, weeks, who knows. It just depends on my grandma. When she is ready to go she will go. I have said my goodbyes. I have said my goodbyes like 15 times now. I keep saying them. I go into the room ever 20 min and say them. I don't want it to be the last time I see her. I'm not ready to let her go yet. I know it's selfish but why can't she just hold on and come out of this. Why can't she just wake up? I just want her to wake up. Damn it, wake up.
Sunday, October 25, 2009
Tuesday, October 6, 2009
Day?. Pain Level 5. 7:40p.
So my month is over and I actually made it. I am sitting in a hospital bed while I type this getting DHE 45 injections trying to break the everlasting migraine. My finger is all taped up taking my pulse and my blood pressure moniter keeps going off every 5 min and the damn IV is uncomfortable so I'll give you all the scoop later.
Monday, September 28, 2009
Day 23. 8:23p. Pain Level 4.
So I've decided that I'm not very good at this blog thing. I started out so good checking in every day, but I really don't know how people do it. I want to write every day I just don't have the energy or even know what to talk about really. From day to day things really don't change too much so I really only check in if I've had a really good or really bad day. I would say that most every day my pain level is between a 3-5. That's pretty much where I am all the time. If I'm under a 3 I consider it good, if I'm over a 5 I consider it bad. Anything over a 4 starts to affect my normal activities so I use that as my scale. If I can't do my normal things then it is bad and it just pisses me off.
I have one week left without abortives and I swear it will be the longest week of my life. THIS HAS BEEN THE LONGEST MONTH OF MY LIFE!!! I am now at the point where I am just pissed off at pretty much everything. I am ready to live pain free again and I think that this is cruel and unusual punishment. I'm trying to figure out what I did to piss the universe off.
I will say that I am getting less migraines but I do not think that it is due to being off my abortives. I think that it is that I have now been on my preventive Topamax for almost 8 weeks and it has finally started doing its job. It's really hard to tell though because I've only had a few breaks in my migraine since I've went off the medication and each time it has only been for a few hours. I did have a 3 1/2 day break starting this past Wednesday but only because I talked my primary doctor into giving me my normal rescue shot Nubian without telling my neurologist. Being migraine free for that long was the best feeling I have ever had. I felt like I had a new body. I can't even explain it, but it really was the best thing I could have asked for. The only bad thing was the stupid head cold that I had so I did have a sinus headache the whole time, but sinus headaches are a walk in the park for me. A few Motrin and some decongestants and they are gone. And I have had a headache everyday for at least 2-3 years so I wouldn't know what to do without one.
I'm going to say it again, I do not think that I have rebound. I suffered from rebound headaches about 2 years ago due to taking too much Excedrin Migraine. It took me about 3 months to figure out what was going on, but once I did I quit taking it immediately. Because I have been through rebound before I have something to base this on and what I am going through is completely different. I may be getting less migraines now, but they are lasting 5-6 days. The only time that they are breaking is if I am going and getting a shot of Toradol and with that they only stop for an hour at the most. The Nubian gives me a few days of relief at least. There has to be something causing me to get migraines that last this long and that are this intense. I have so much pressure inside my head sometimes that I feel like my brain is going to bust out of my eyes and ears.
So I am going to try to get through this week. Luckily, or maybe unluckily, I'm busy at work and we have a big derby weekend so hopefully it'll fly by. But I also hope that I can stay feeling good enough to not have to miss out on anything. I'm also throwing a baby shower on Saturday and I am terrified that I am going to be sick for it. I'm trying not to think about it because I know that if I worry I'll make myself sick, but it's hard not to. It's just a constant worry for me, and I know it is for other migraineurs too. (When I say sick I mean have a migraine over a level 5)
I have one week left without abortives and I swear it will be the longest week of my life. THIS HAS BEEN THE LONGEST MONTH OF MY LIFE!!! I am now at the point where I am just pissed off at pretty much everything. I am ready to live pain free again and I think that this is cruel and unusual punishment. I'm trying to figure out what I did to piss the universe off.
I will say that I am getting less migraines but I do not think that it is due to being off my abortives. I think that it is that I have now been on my preventive Topamax for almost 8 weeks and it has finally started doing its job. It's really hard to tell though because I've only had a few breaks in my migraine since I've went off the medication and each time it has only been for a few hours. I did have a 3 1/2 day break starting this past Wednesday but only because I talked my primary doctor into giving me my normal rescue shot Nubian without telling my neurologist. Being migraine free for that long was the best feeling I have ever had. I felt like I had a new body. I can't even explain it, but it really was the best thing I could have asked for. The only bad thing was the stupid head cold that I had so I did have a sinus headache the whole time, but sinus headaches are a walk in the park for me. A few Motrin and some decongestants and they are gone. And I have had a headache everyday for at least 2-3 years so I wouldn't know what to do without one.
I'm going to say it again, I do not think that I have rebound. I suffered from rebound headaches about 2 years ago due to taking too much Excedrin Migraine. It took me about 3 months to figure out what was going on, but once I did I quit taking it immediately. Because I have been through rebound before I have something to base this on and what I am going through is completely different. I may be getting less migraines now, but they are lasting 5-6 days. The only time that they are breaking is if I am going and getting a shot of Toradol and with that they only stop for an hour at the most. The Nubian gives me a few days of relief at least. There has to be something causing me to get migraines that last this long and that are this intense. I have so much pressure inside my head sometimes that I feel like my brain is going to bust out of my eyes and ears.
So I am going to try to get through this week. Luckily, or maybe unluckily, I'm busy at work and we have a big derby weekend so hopefully it'll fly by. But I also hope that I can stay feeling good enough to not have to miss out on anything. I'm also throwing a baby shower on Saturday and I am terrified that I am going to be sick for it. I'm trying not to think about it because I know that if I worry I'll make myself sick, but it's hard not to. It's just a constant worry for me, and I know it is for other migraineurs too. (When I say sick I mean have a migraine over a level 5)
Wednesday, September 23, 2009
Day 18. 9:33p. Pain Level 8.
Today is the worst pain I have had so far. I went to bed with a migraine and woke up with a sinus infection so it doubled the migraine pain. Needless to say I was at the doctor again today. I took 25mg of Phenergan and it didn't stop the migraine induced vomiting. I'm achy all over and my head is stuffy. I feel like I have a sinus headache and a migraine. I'm not sure if that is even possible, but I have strong symptoms of both.
I was supposed to to my mom's hair today so she came over to my house before to bring me lunch since I was so sick. This was the first time she has ever seen me this bad. I think it finally sunk in how much I am really suffering. I was in so much pain today that all I could do was cry. Cry and vomit. I have always tried to hide this from my mom because I never wanted her to know how bad I actually get but now it's out there. I feel guilty because she is leaving for vacation tomorrow and now she is going to be worrying about me the whole time.
When she saw how bad I felt she decided that she would just drive me to the doctor. Because my pain level was at about a 9 I got my normal rescue shot. I had to I had no choice. There was no way that I could have went on without it. It made me feel better for about 6 hours but now my migraine is coming back. I also got a steroid shot for the sinus infection and that did make me feel a little better. Oh, and another 25mg of Phenergan which took away my nausea.
My blood test results came back and I don't have Celiac which I'm excited about! But it also would have been nice if I would have found a cause...no such luck. But I'd much rather keep all the good food in my life.
I have so much more to update you all on but I have to go back to sleep while I can before this pain gets too unbearable.
I was supposed to to my mom's hair today so she came over to my house before to bring me lunch since I was so sick. This was the first time she has ever seen me this bad. I think it finally sunk in how much I am really suffering. I was in so much pain today that all I could do was cry. Cry and vomit. I have always tried to hide this from my mom because I never wanted her to know how bad I actually get but now it's out there. I feel guilty because she is leaving for vacation tomorrow and now she is going to be worrying about me the whole time.
When she saw how bad I felt she decided that she would just drive me to the doctor. Because my pain level was at about a 9 I got my normal rescue shot. I had to I had no choice. There was no way that I could have went on without it. It made me feel better for about 6 hours but now my migraine is coming back. I also got a steroid shot for the sinus infection and that did make me feel a little better. Oh, and another 25mg of Phenergan which took away my nausea.
My blood test results came back and I don't have Celiac which I'm excited about! But it also would have been nice if I would have found a cause...no such luck. But I'd much rather keep all the good food in my life.
I have so much more to update you all on but I have to go back to sleep while I can before this pain gets too unbearable.
Monday, September 21, 2009
Day 16. 9:15p. Pain Level 5.
I called and left a message for the neurologist about the DHE45 injections this morning and of course I haven't heard back yet. The lady that I spoke to said that she had never heard of that so I'm not sure if that is a good or a bad sign. I'm sure that I won't hear from them for at least another 3-4 days because that seems to be how it goes in doctors offices.
Other than that I don't have much to update on.
Other than that I don't have much to update on.
Saturday, September 19, 2009
Day 14. 11:37p. Pain level 6.
Sorry I haven't checked in the last few days, it's been crazy. I have been in an overwhelming amount of pain since Monday night as I'm sure you gathered from my previous posts. I don't really even know where to begin to get you all caught up. Okay, let me try to think here. Thinking straight is becoming more and more difficult to do. I guess that's a good starting point.
The Topamax is working wonders for my migraine prevention but it's making me a fucking idiot. I can't even form full sentences in my head sometimes. I know I've posted about it before but it really does keep getting worse. Just writing this blog takes a good 30 min of typing, backspacing, retyping, rereading, backspacing again, and starting over. I've never been a good speller but I'm having to ask Chris how to spell the most common words such as juice. Seriously, I forgot how to spell juice the other day. I also forget complete conversations. I'm sure some of it is selective hearing but some of it must be the medication. But it is all totally worth it because before this hellish 5 day migraine I was down to 2 a week which is a HUGE improvement. And I have lost 12 lbs and am fitting into jeans that I haven't worn in months. Gotta love that. I'll look like Rachel Zoe in no time...yeah right!
So there's that, then there's my mom. She's trying to understand what I'm going through, but she just doesn't get it. She sometimes worries so much that she'll say all the wrong things. Like my lifestyle brings on my "headaches". Okay, first off, don't call my migraines a headache. I hate that. A headache is something you can cure with Advil. Secondly stress doesn't trigger a migraine. Third, really, my lifestyle, what lifestyle is that. I don't drink, I don't smoke, I work out 3-5 times a week. My healthy lifestyle brings on migraines I guess is what she means. Sure I never take time for myself but who the hell does? I would love to be able to take leisurely vacations and sit around and enjoy time off but I work full time and have a non-profit roller derby league to run. And we're the #1 roller derby league in Oklahoma City. You don't get that title by sitting on your ass talking about derby now do you? I love what I do and maybe I should take a break but I don't want to, not now, so back off. If you really want to support me just ask me if you can turn the lights down or if today is any better than yesterday. That's how you support a migraineur, not by telling them what they should be doing.
After 3 days of trying to get my neurologist on the phone I finally talked to him on Friday and boy did he get an ear full. I had been to the ER which offered me no relief and I was at my breaking point. Keep in mind I have been having about 5 mental breakdowns a day where I would just start bawling my eyes out with no warning, usually during the middle of work. Yep, while I was with a client. I don't know if my serotonin levels are super low because I'm off the triptans or what but something is going to with my chemical levels and I have been feeling like I am on the verge of a nervous breakdown for about 8 days now. So after he talked me down from the edge so to speak (I was about to say fuck it and take my Frova) he decided it would be a good idea to call me in some Xanax. I have taken it now for 2 days and I have only cried 3 times so it seems to be helping a little. It's a really low dose and I'm even breaking them in half because I hate taking stuff that makes me sleepy. But whatever keeps me sane. I'm not too proud to be on crazy meds.
Now I'm the patient that all doctors hate because I do my own research and I read the latest studies that are out there and I refuse to be uneducated on what is going on with my body. I will not let someone tell me something and not know everything there is to know about it. Well, every since I found out that my doc thinks I'm rebounding I've been reading everything on rebounding. I found out that there is a way that you can get through the rebound process in 3 days but you have to be hospitalized and go through a series of DHE45 injections. I found out about this on one of the forums that I am active on. I'm calling the doc on Monday and begging to do this. It would be so much easier than another 2-6 weeks without triptans. Since I only work 4 days a week anyway I could do it over a weekend and not have to miss any work. Even if I did have to miss work I'm sure my family would help me out if I needed it.
I know this entry has been all over the place and really has had no rhyme or reason to it but that is how my brain is functioning right now so I apologize. Oh, I took the Celiac test so hopefully I find out those results next week. I also got the go ahead to get Toradol(super anti-inflammatory) shots if needed, which I did. I went to a doc in the box today and was so excited to get a shot. It made my head feel great for all of 45 min and then the pain slowly started coming back. But that 45 min was the happiest I've been all week. It made me wanna dance to David Bowie, which I tried to do.
And finally I decided that on the days I can handle it I'm gonna start doing yoga. I went to a class this morning and I'm already sore. Don't ask how I kept up. It was way too advance for me but I tried as best I could. On the way home from the doc in the box we stopped at the Health Food Store (OKC's best grocery store if you haven't been) and I got some new vitamins that are supposed to help with migraines. Here's my new daily regimen...starting tomorrow.
5-HTP-200mg
Magnesium-400-600mg
B2-200-400mg
CoQ10-150mg
Most of these I'm going to up the mg within the first month. I read a ton of studies that used these in preventing migraines. Butterbur and Feverfew were also used but due to my severe ragweed allergy I can't take those:(
Longest. Post. Ever. Whew.
The Topamax is working wonders for my migraine prevention but it's making me a fucking idiot. I can't even form full sentences in my head sometimes. I know I've posted about it before but it really does keep getting worse. Just writing this blog takes a good 30 min of typing, backspacing, retyping, rereading, backspacing again, and starting over. I've never been a good speller but I'm having to ask Chris how to spell the most common words such as juice. Seriously, I forgot how to spell juice the other day. I also forget complete conversations. I'm sure some of it is selective hearing but some of it must be the medication. But it is all totally worth it because before this hellish 5 day migraine I was down to 2 a week which is a HUGE improvement. And I have lost 12 lbs and am fitting into jeans that I haven't worn in months. Gotta love that. I'll look like Rachel Zoe in no time...yeah right!
So there's that, then there's my mom. She's trying to understand what I'm going through, but she just doesn't get it. She sometimes worries so much that she'll say all the wrong things. Like my lifestyle brings on my "headaches". Okay, first off, don't call my migraines a headache. I hate that. A headache is something you can cure with Advil. Secondly stress doesn't trigger a migraine. Third, really, my lifestyle, what lifestyle is that. I don't drink, I don't smoke, I work out 3-5 times a week. My healthy lifestyle brings on migraines I guess is what she means. Sure I never take time for myself but who the hell does? I would love to be able to take leisurely vacations and sit around and enjoy time off but I work full time and have a non-profit roller derby league to run. And we're the #1 roller derby league in Oklahoma City. You don't get that title by sitting on your ass talking about derby now do you? I love what I do and maybe I should take a break but I don't want to, not now, so back off. If you really want to support me just ask me if you can turn the lights down or if today is any better than yesterday. That's how you support a migraineur, not by telling them what they should be doing.
After 3 days of trying to get my neurologist on the phone I finally talked to him on Friday and boy did he get an ear full. I had been to the ER which offered me no relief and I was at my breaking point. Keep in mind I have been having about 5 mental breakdowns a day where I would just start bawling my eyes out with no warning, usually during the middle of work. Yep, while I was with a client. I don't know if my serotonin levels are super low because I'm off the triptans or what but something is going to with my chemical levels and I have been feeling like I am on the verge of a nervous breakdown for about 8 days now. So after he talked me down from the edge so to speak (I was about to say fuck it and take my Frova) he decided it would be a good idea to call me in some Xanax. I have taken it now for 2 days and I have only cried 3 times so it seems to be helping a little. It's a really low dose and I'm even breaking them in half because I hate taking stuff that makes me sleepy. But whatever keeps me sane. I'm not too proud to be on crazy meds.
Now I'm the patient that all doctors hate because I do my own research and I read the latest studies that are out there and I refuse to be uneducated on what is going on with my body. I will not let someone tell me something and not know everything there is to know about it. Well, every since I found out that my doc thinks I'm rebounding I've been reading everything on rebounding. I found out that there is a way that you can get through the rebound process in 3 days but you have to be hospitalized and go through a series of DHE45 injections. I found out about this on one of the forums that I am active on. I'm calling the doc on Monday and begging to do this. It would be so much easier than another 2-6 weeks without triptans. Since I only work 4 days a week anyway I could do it over a weekend and not have to miss any work. Even if I did have to miss work I'm sure my family would help me out if I needed it.
I know this entry has been all over the place and really has had no rhyme or reason to it but that is how my brain is functioning right now so I apologize. Oh, I took the Celiac test so hopefully I find out those results next week. I also got the go ahead to get Toradol(super anti-inflammatory) shots if needed, which I did. I went to a doc in the box today and was so excited to get a shot. It made my head feel great for all of 45 min and then the pain slowly started coming back. But that 45 min was the happiest I've been all week. It made me wanna dance to David Bowie, which I tried to do.
And finally I decided that on the days I can handle it I'm gonna start doing yoga. I went to a class this morning and I'm already sore. Don't ask how I kept up. It was way too advance for me but I tried as best I could. On the way home from the doc in the box we stopped at the Health Food Store (OKC's best grocery store if you haven't been) and I got some new vitamins that are supposed to help with migraines. Here's my new daily regimen...starting tomorrow.
5-HTP-200mg
Magnesium-400-600mg
B2-200-400mg
CoQ10-150mg
Most of these I'm going to up the mg within the first month. I read a ton of studies that used these in preventing migraines. Butterbur and Feverfew were also used but due to my severe ragweed allergy I can't take those:(
Longest. Post. Ever. Whew.
Thursday, September 17, 2009
Subscribe to:
Posts (Atom)
