Doctor Changes
As I mentioned before, I've asked for a referral to a new neurologist because my old one is crapping out on me (still waiting for that, but it will take months). Then yesterday I got a letter in the mail that my GP is moving to the Island!! So I'm losing him too. :( I hope his replacement is ok, because I love my GP. He's the good one.... :(
Antibiotics
A few weeks ago I was put on antibiotics for an injury. It's the first time I've been put on antibiotics since being on AEDs. Big mistake. It was a walk-in clinic doctor and I told her which meds I'm already on and to make sure it's compatible. She did not take any time to check, but simply said, "this one is really gentle" (my GP would have double checked...). She gave me Cephalexin. I couldn't even finish the prescription; I had a massive cluster of very intense partials while on the Cephalexin. Looked it up and sure enough, it's in a class of antibiotics called Cephalosporins, which can lower the seizure threshold. Apparently it's a relatively rare conflict, but it does happen. As soon as I stopped taking it, the partials stopped again. So now I know: antibiotics = bad. And don't trust walk-in clinic doctors.
Stress
I've been under an enormous amount of stress lately. I don't even know where to start so I won't get into it, but it's not good for my health. I have a plan and am going to make some changes to my life to get the stress under control. In the meantime, I've been focusing on self care. I've also started seeing a counselor. This was recommended to me a long time ago, but I've only recently started, because I happened to meet one who specializes in people who have chronic illnesses. When I met her and she told me what she does, I was shocked. There are counselors who specialize in people with chronic illnesses?! I wish I'd known this in the beginning, when it all started. Interestingly, she had been wondering about how to expand her practice. I told her she should be partnering with the doctors' offices, because I wish someone would have told me in the very beginning, when everything was new and terrifying. I wish my neurologist would have handed me a counselor's card and said, "here's someone you can talk to about this."
Aside from that... just plugging on. My next neuro appointment has been pushed back to May now (they've now changed it THREE times) so nothing else to tell.
Thursday, April 12, 2018
Sunday, March 11, 2018
One Year!
Today marks one year since my last generalized seizure. :)
I also haven't had any partials since Christmas day, which is a record at 11 weeks (knock on wood--whenever I say that, I start having them again...).
So that means my current med combination is working, as far as that goes.
That does NOT include the Lamotrigine, which is the one that was making me sick a couple of months ago, and which I stopped taking.
I do occasionally still have mild symptoms which are difficult to describe, but which I would call "waves" of activity in my brain which pass without materializing into a partial seizure. I can feel a weirdness or a familiarity or something else indescribable and then it passes without developing.
My biggest challenge right now is the stress in my life, which of course is not good for my health in general and can be a trigger for seizures in particular. I am working on a plan to change some things up and reduce my stress load. Also working on practicing more and better self care.
Still waiting on the new neuro referral, but I expect that to take at least 4-5 months, if not longer.
I also haven't had any partials since Christmas day, which is a record at 11 weeks (knock on wood--whenever I say that, I start having them again...).
So that means my current med combination is working, as far as that goes.
That does NOT include the Lamotrigine, which is the one that was making me sick a couple of months ago, and which I stopped taking.
I do occasionally still have mild symptoms which are difficult to describe, but which I would call "waves" of activity in my brain which pass without materializing into a partial seizure. I can feel a weirdness or a familiarity or something else indescribable and then it passes without developing.
My biggest challenge right now is the stress in my life, which of course is not good for my health in general and can be a trigger for seizures in particular. I am working on a plan to change some things up and reduce my stress load. Also working on practicing more and better self care.
Still waiting on the new neuro referral, but I expect that to take at least 4-5 months, if not longer.
Wednesday, February 28, 2018
One Foot in Front of the Other.
Speaking of taking a month to call me back, it looks like I am going to have to get a new neurologist. When the receptionist did finally call me back, she simply asked whether the problem had "resolved itself". I said yes, it resolved itself because I stopped taking the medication (!). She then told me that my neuro is dramatically cutting back his hours and is only going to be available part time, which is why it took so long to call me back. Then this week they called me again to push back my April appointment by two weeks and to tell me that from now on he will only be available two days per week. So basically, he's not available. And given that I'm still trying to figure out the right meds and I need someone who is around on a regular basis to help me do that, I need a neurologist who is around. Apparently I have to get a new referral, and I am supposed to do that through my GP. Very annoying. The receptionist said that there will be a 4+ month wait list for a new neurologist... which I don't think is bad given that it takes 4+ months to see my OWN neurologist anyway! In the meantime I'm running out of all of my prescriptions and can't get in to see him... thank goodness for the pharmacists and a good GP.
In other news, I have had a few rough weeks where I have felt very discouraged and burned out. I'm now working two full time jobs just to try to get my life and business back on track. That's really difficult and I'm exhausted all the time and trying to figure out how this is going to work, and how long I can manage that. My health can't handle this for long and my anxiety levels have been extremely high.
On the plus side, I've recently met an inspiring new friend who has been to hell and back in his own life (much worse than mine) and who has been talking me through the past couple of weeks. He's been strongly encouraging me to get some counseling to help me deal with everything. Incidentally, I just recently also met a counselor who specialises in people with chronic illnesses. So I'm going to start seeing her and hopefully she can help me work through some of the stress and anxiety and burnout and figure out where to go from here.
And yesterday as I was filling up my car at the gas station, I was overcome with an enormous sense of gratitude. It wasn't so long ago that I wasn't allowed to drive and was so broke that I couldn't fill up my car anyway. Now I'm driving and have a full tank of gas. So there is much to be grateful for.
One foot in front of the other.
Thursday, January 4, 2018
New Year, New Medication!
It's hard to believe that it's been two years already since I tried my first anti-seizure medication. I only lasted six weeks on that first one, during which time I cried nearly every day and landed in the ER twice. I ended up having to come off of it when I developed a rash. It wasn't the Death Rash, but any rash with these meds is cause for discontinuing them.
When I last saw my neuro a few months ago we had talked about reducing my Keppra because it's the one that makes me depressed. However, I'm still having some partials (0-5/month) so before we can reduce it we have to increase something else. So as of today we're trying something new: Lamotrigine.
But this is another one that can cause the Death Rash, so I have to start it very gradually. It will take 8 weeks to get up to therapeutic dose. In the meantime I will stay on all three meds (!) and then as long as I don't develop a rash or any other major issues, I can start to decrease the Keppra until it's gone.
The ultimate goal, he said today, is to eventually only be on one med. Though I personally would be ok with staying on two as long as they're working and not making me miserable.
I asked him today whether it's reasonable to aim for zero partials altogether, or whether I will always have a few here and there. He said it's reasonable to aim for zero, so that's good news.
I also mentioned that I had been thinking back to some of the thoughts, experiences, and things that were happening before the meds were working... some of the more interesting experiences and weird things that were going on in my brain. I kind of miss them, only because they were rather fascinating (not that I want them back). Of course I don't want to go back to having seizures (and he said good, because the seizures aren't good for me!) but at the same time some of the things that were popping up--like the early childhood memories--were pretty interesting, and have stopped now since the meds are working. But that is the trade-off, I suppose.
Wish me luck with the new med--no rashes and no bad side effects! He said it is "well tolerated", but he says that about all of the ones that we try.
When I last saw my neuro a few months ago we had talked about reducing my Keppra because it's the one that makes me depressed. However, I'm still having some partials (0-5/month) so before we can reduce it we have to increase something else. So as of today we're trying something new: Lamotrigine.
But this is another one that can cause the Death Rash, so I have to start it very gradually. It will take 8 weeks to get up to therapeutic dose. In the meantime I will stay on all three meds (!) and then as long as I don't develop a rash or any other major issues, I can start to decrease the Keppra until it's gone.
The ultimate goal, he said today, is to eventually only be on one med. Though I personally would be ok with staying on two as long as they're working and not making me miserable.
I asked him today whether it's reasonable to aim for zero partials altogether, or whether I will always have a few here and there. He said it's reasonable to aim for zero, so that's good news.
I also mentioned that I had been thinking back to some of the thoughts, experiences, and things that were happening before the meds were working... some of the more interesting experiences and weird things that were going on in my brain. I kind of miss them, only because they were rather fascinating (not that I want them back). Of course I don't want to go back to having seizures (and he said good, because the seizures aren't good for me!) but at the same time some of the things that were popping up--like the early childhood memories--were pretty interesting, and have stopped now since the meds are working. But that is the trade-off, I suppose.
Wish me luck with the new med--no rashes and no bad side effects! He said it is "well tolerated", but he says that about all of the ones that we try.
Thursday, November 16, 2017
All these strands of love
I was writing someone an email, trying to describe and explain how this journey has been, and now I feel the need to share with y'all what I said about you:
The past two (and a bit) years have been the hardest of my life.
I don't believe in a sentient universe, but if I did I would be asking it what the hell I've done to deserve how shitty the last two years have been. My illness, the doctors, tests, hospitals, meds, seizures, feeling shitty ALL the time, exhausted ALL the time, sad ALL the time. and scared.... so afraid. Never knowing if or when things will get better, if or when I might have a seizure today or in public or at work (again). What it might do to my life over the long term. Not being able to drive. Not being able to work. Not being able to fucking buy groceries. My income dropping off to virtually zero, for months. Getting suicidal (repeatedly). Spending days/weeks in bed, crying. And The Flood, and being displaced, and having to move (twice), and my rent going up right when my income was dropping off and I wasn't working and wasn't driving. More hospital visits, more ambulances, more tests, more meds. I'm the crazy girl crying on public transit and then fixing her make-up in the bathroom at work, trying to hold things together. Then I go from not working to working seven days/week just to get my income back on track, and spinning my wheels because my business is stagnating, and stressing every. fucking. month. about how I'm going to pay my rent. (and this week my car broke down and I can't afford to fix it... so I'm back to transit...)
Thank you.
The past two (and a bit) years have been the hardest of my life.
I don't believe in a sentient universe, but if I did I would be asking it what the hell I've done to deserve how shitty the last two years have been. My illness, the doctors, tests, hospitals, meds, seizures, feeling shitty ALL the time, exhausted ALL the time, sad ALL the time. and scared.... so afraid. Never knowing if or when things will get better, if or when I might have a seizure today or in public or at work (again). What it might do to my life over the long term. Not being able to drive. Not being able to work. Not being able to fucking buy groceries. My income dropping off to virtually zero, for months. Getting suicidal (repeatedly). Spending days/weeks in bed, crying. And The Flood, and being displaced, and having to move (twice), and my rent going up right when my income was dropping off and I wasn't working and wasn't driving. More hospital visits, more ambulances, more tests, more meds. I'm the crazy girl crying on public transit and then fixing her make-up in the bathroom at work, trying to hold things together. Then I go from not working to working seven days/week just to get my income back on track, and spinning my wheels because my business is stagnating, and stressing every. fucking. month. about how I'm going to pay my rent. (and this week my car broke down and I can't afford to fix it... so I'm back to transit...)
And in all of that, there are only two things keeping me from going completely off the rails:
- my own inner strength, which is currently at an all time low
-
my friends and family. I've lost some in the process. Some of them have
blatantly abandoned me. But the rest have been amazing. They have gone
with me to the hospital and in the ambulance. They have driven me to the
grocery store. They have come when I asked for company. They have had
me over for dinner. They have gone with me to the forest. They have
comforted me when I'm sad. They've taken me for coffee, and given me
business advice. They have helped me financially. They have inspired
me. They have followed my blog and given me so much support and walked
with me for the past two years and told me that I'm strong and that I
can do this. Right now, at this time, it's mostly one-sided. I have
nothing to give them right now. I need them to hold me up, and they are
doing it, and I'm so incredibly grateful to them. This is all new to me.
Before this I was always so independent and strong; I never needed
anyone else (I thought). I always took care of myself. I have had to
learn how to ask for help, and how to accept it when offered. I've had
to learn how to be vulnerable, and my community has wrapped me up and
held me together with all of these strands of love.
Thank you.
Sunday, November 5, 2017
Victim Mode?
Recently I have been dealing with a situation where another professional has been treating one of my clients poorly and she had asked me to talk to him on her behalf. I spoke with him on the phone last week and he treated me just as poorly, to the point of attempting to bully and intimidate me over the phone; when that did not work, he hung up on me.
I went to my regional manager to discuss it with him and get his insight because he knows the person in question. He let me know that the person has been diagnosed with a terminal illness--and while that does not excuse treating people badly, it may explain some of the behaviours.
I let that sink in for a few minutes, and I felt some of my anger soften. And yet I know that we all choose our response to the things that happen to us. I said, "but I have a chronic illness, and so does [another leader in our company] and we don't take it out on everyone else." He responded, "and that's what makes you good people."
Granted, my illness is chronic, not terminal. It's not going to kill me (not statistically, at least... there is something called SUDEP but that's highly unlikely).
Regarding our responses to what happens to us:
If anything, my illness has made me more empathetic to the plight of others, not less. I didn't get it before. I didn't understand illness before. I had always been healthy. I didn't know what it was like to always feel shitty and sick and exhausted, and yet still have to find a way to function. I didn't know what it was like feel betrayed by your own body. I didn't know what it was like to live with deep depression. Now people ask me "how are you?" and I never know how to answer them; my standard answer is, "It depends on the day."
And so it mystifies me when I see memes on facebook that pit one illness against another, like the one someone posted yesterday, which created an argument where one person's friends started attacking another because in their minds diabetes deserves public funding but addictions don't. And the vitriol that came out of that thread, and the personal attacks that were completely uncalled for, just like the bullying of the man I talked about before--it might be explained by the shitty situation a person is in, but it can't be justified. Going through a bad situation does not justify treating others around us like shit. My experience with one illness doesn't negate the experience of people with other illnesses.
Where's the empathy? I'm so absolutely, incredibly grateful for the care I've received for my epilepsy; why would I want to deny that care for ANY other illness, just because it's different from mine?
And whether I have a terminal illness or a chronic illness or I am perfectly healthy for the rest of my life, why waste ANY of my energy on this earth in victim mode?
I mean sure, I've had my share of "feel sorry for myself" days. But I can't stay there all the time. It is what it is; eventually I have to accept it and move forward. Taking it out on other people doesn't make anything better, only worse. The best thing I can do is focus on making myself better (as much as possible and realistic) and giving the rest away. I wouldn't deny anyone else the opportunity to do the same.
I went to my regional manager to discuss it with him and get his insight because he knows the person in question. He let me know that the person has been diagnosed with a terminal illness--and while that does not excuse treating people badly, it may explain some of the behaviours.
I let that sink in for a few minutes, and I felt some of my anger soften. And yet I know that we all choose our response to the things that happen to us. I said, "but I have a chronic illness, and so does [another leader in our company] and we don't take it out on everyone else." He responded, "and that's what makes you good people."
Granted, my illness is chronic, not terminal. It's not going to kill me (not statistically, at least... there is something called SUDEP but that's highly unlikely).
Regarding our responses to what happens to us:
If anything, my illness has made me more empathetic to the plight of others, not less. I didn't get it before. I didn't understand illness before. I had always been healthy. I didn't know what it was like to always feel shitty and sick and exhausted, and yet still have to find a way to function. I didn't know what it was like feel betrayed by your own body. I didn't know what it was like to live with deep depression. Now people ask me "how are you?" and I never know how to answer them; my standard answer is, "It depends on the day."
And so it mystifies me when I see memes on facebook that pit one illness against another, like the one someone posted yesterday, which created an argument where one person's friends started attacking another because in their minds diabetes deserves public funding but addictions don't. And the vitriol that came out of that thread, and the personal attacks that were completely uncalled for, just like the bullying of the man I talked about before--it might be explained by the shitty situation a person is in, but it can't be justified. Going through a bad situation does not justify treating others around us like shit. My experience with one illness doesn't negate the experience of people with other illnesses.
Where's the empathy? I'm so absolutely, incredibly grateful for the care I've received for my epilepsy; why would I want to deny that care for ANY other illness, just because it's different from mine?
And whether I have a terminal illness or a chronic illness or I am perfectly healthy for the rest of my life, why waste ANY of my energy on this earth in victim mode?
I mean sure, I've had my share of "feel sorry for myself" days. But I can't stay there all the time. It is what it is; eventually I have to accept it and move forward. Taking it out on other people doesn't make anything better, only worse. The best thing I can do is focus on making myself better (as much as possible and realistic) and giving the rest away. I wouldn't deny anyone else the opportunity to do the same.
Monday, October 9, 2017
Adapting...?
It's been a month since we started increasing the Topamax from 200mg to 300mg. It was a 25mg increase each week for 4 weeks, so the increase just finished a little over a week ago. Overall it went well. I didn't feel all loopy and stoned like when I first went on the Topamax back in March. However, I still haven't been feeling well and I'm not really sure whether it's because of the meds or not. I think it must be.
The first few weeks I was really busy with work so I didn't have time to really pay attention to what was going on. It's only in the past two weeks that I've really noticed. Most of the time I feel pretty normal, but then I have these random times (a few hours each day, or just random times each day) where I just feel off. Like I need to go lay down, or I feel like I'm getting sick, or I feel like my partials are coming back, or something just feels wrong and I can't identify it. Last week I had one partial and I had 3 in September, but that's it since increasing the med so that is ok.
The biggest thing has been when I try to go for a run. I will feel ok for a bit and then I'll start to feel woozy/dizzy/off and I'll have to walk for a bit, or I'll feel like I'm going to have a partial so I'll walk until it passes, or I'll feel like I'm going to pass out and have to walk it off until it passes. It's got to be the med because this med is known to mess with body temperature, electrolytes, and make you stop sweating and overheat, etc... you're supposed to be careful with activity while taking it. So I've been paying attention to that while running. I've been making sure that I'm hydrated, paying attention to breathing, sweating, heat, etc. But even so, even with gentle, easy runs, I'm still feeling like crap.
I'm going to keep focusing on hydration and electrolytes and hope that it improves over the next few weeks as I continue to adapt to the new dose... it's still new. If it doesn't get better I'll talk to my neuro about it when I see him next (he's a runner too so that's helpful!).
The first few weeks I was really busy with work so I didn't have time to really pay attention to what was going on. It's only in the past two weeks that I've really noticed. Most of the time I feel pretty normal, but then I have these random times (a few hours each day, or just random times each day) where I just feel off. Like I need to go lay down, or I feel like I'm getting sick, or I feel like my partials are coming back, or something just feels wrong and I can't identify it. Last week I had one partial and I had 3 in September, but that's it since increasing the med so that is ok.
The biggest thing has been when I try to go for a run. I will feel ok for a bit and then I'll start to feel woozy/dizzy/off and I'll have to walk for a bit, or I'll feel like I'm going to have a partial so I'll walk until it passes, or I'll feel like I'm going to pass out and have to walk it off until it passes. It's got to be the med because this med is known to mess with body temperature, electrolytes, and make you stop sweating and overheat, etc... you're supposed to be careful with activity while taking it. So I've been paying attention to that while running. I've been making sure that I'm hydrated, paying attention to breathing, sweating, heat, etc. But even so, even with gentle, easy runs, I'm still feeling like crap.
I'm going to keep focusing on hydration and electrolytes and hope that it improves over the next few weeks as I continue to adapt to the new dose... it's still new. If it doesn't get better I'll talk to my neuro about it when I see him next (he's a runner too so that's helpful!).
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