Yesterday I did something I didn't think I could do. It would have been something that I would not have been able to do a year ago, or even a month ago. I went to the doctor by myself. I drove myself, which is something I don't do anymore, and went in. I saw a doctor and then I got labs and I did it alone. My anxiety was pretty bad but I still did it. I know I'm 30 so doing this alone shouldn't be such a big deal but it really is for me. It's a huge deal and I'm really proud of myself.
The pain was so bad that I just didn't know what else to do. A few nights ago I was in tears because I thought, "Is this my life now? Do I have to be in this much pain all the time from here on out?" You don't ever need to worry about this from me but I totally understand why this is nicknamed "The Suicide Disease". I get it now. I didn't before but I do now.
So I went in and the doctor I saw kindly assured me that this is not going to be my life and there are a lot of things we can try. She also doubled my dosage again. It doesn't work this quickly but I'm actually already feeling a bit better. Maybe that's just my brain telling me relief is on the way so I can start feeling better, or maybe it's just a good day. I don't know but I do know that I'm feeling hopeful.
If this medication increase doesn't help we can continue upping the dose or add in other medications or just simply try other things. Surgery is even an option in the future if it doesn't get any better. There are things we can do and that makes me feel okay about all of this. Having hope is as good a medicine as any, right?
Thursday, August 31, 2017
Monday, August 28, 2017
I don't have a title for this one... but it's another update!
I don't have much to update you on right now but I wanted to touch base. I had a really difficult 8 or 9 days after started my medication but, thankfully, I'm finally starting to feel better.
The Trigeminal Neuralgia was not feeling better in the slightest and was actually hurting even more, and the medication was making me feel so sick. I have been so incredibly dizzy and disoriented, as well as sick to my stomach, and having problems with my vision. I've also been feeling sleepy. I'm still dizzy and my vision is still fuzzy but I'm feeling more like myself. The pain is still there, though, but not those intense lightning bolt pains that took me to the ER in the first place. Now it's a more generalized pain on the entire right side of my face and head. It's pretty bad, but it's tolerable.
I'm slowly learning how to deal with my new-normal. I'm having to change a lot of things so that's been a bit of a challenge. All of my food has to be soft and I can no longer sing, which has always been something I love doing. Talking, smiling, eating, laughing, all of it can induce more pain. Even doing my makeup or washing my face can make it hurt more. I don't think it's all about the physical manipulation though because I've noticed that weather pressure, cold, wind, heat and stress greatly affect it as well. I'm sure there is more to it, as well.
I can't get an appointment with my primary doctor until October so I guess I'll just have to wait until there to get the ball rolling on all of the other things wrong with me. I'm betting I'll have to get a same day appointment with ANY doctor in the meantime, though, to talk about my TN and how it's still painful. I'll give it some more time but maybe I'll try to wait that out, too. I'll let you know.
The Trigeminal Neuralgia was not feeling better in the slightest and was actually hurting even more, and the medication was making me feel so sick. I have been so incredibly dizzy and disoriented, as well as sick to my stomach, and having problems with my vision. I've also been feeling sleepy. I'm still dizzy and my vision is still fuzzy but I'm feeling more like myself. The pain is still there, though, but not those intense lightning bolt pains that took me to the ER in the first place. Now it's a more generalized pain on the entire right side of my face and head. It's pretty bad, but it's tolerable.
I'm slowly learning how to deal with my new-normal. I'm having to change a lot of things so that's been a bit of a challenge. All of my food has to be soft and I can no longer sing, which has always been something I love doing. Talking, smiling, eating, laughing, all of it can induce more pain. Even doing my makeup or washing my face can make it hurt more. I don't think it's all about the physical manipulation though because I've noticed that weather pressure, cold, wind, heat and stress greatly affect it as well. I'm sure there is more to it, as well.
I can't get an appointment with my primary doctor until October so I guess I'll just have to wait until there to get the ball rolling on all of the other things wrong with me. I'm betting I'll have to get a same day appointment with ANY doctor in the meantime, though, to talk about my TN and how it's still painful. I'll give it some more time but maybe I'll try to wait that out, too. I'll let you know.
Thursday, August 17, 2017
ER Update
I live my life with pain. That's just how it is. I've learned to deal with it and sometimes it's unbearable but I always make it through. I've learned what my pain means and I accept it completely but sometimes I experience a new kind of pain and it scares me. I can do the same old pain day after day but when it's something new it takes me by surprise and makes me really nervous.
On Monday morning I was struck with a pain so intense and violent I actually screamed out loud. I was in the produce department at my local grocery store and it terrified me. It came out of nowhere and I didn't know what to do. It was in my head but it wasn't a migraine or a headache or something that I could understand. I went about my day with it continuing every 5 to 10 minutes. I thought it was just something new that I would have to get used it. When I got home I took a Percocet and tried to rest but it didn't help. The pain continued and it just kept getting worse and worse.
I actually told Hunter goodbye that night and I left my parents a note telling them how much I love them. I was so scared. I thought my brain was bleeding or that I was about to die at any moment. The pain didn't stop. It was still there in the morning when I woke up. I was still alive so I figured I could just deal with it. If it didn't kill me I could recover from it. I've never known when the pain is enough to make me go to the ER. I have pain every single day of my life so what makes it bad enough or different enough to warrant a trip to the hospital? Well, I actually turned to Dr. Google for the answer. Don't ever google head pain. Trust me. It will make you think you're dying. Although, I guess since I already thought I was dying it just confirmed my fears. I was so scared I decided to go.
You guys know what a big deal going to the doctor or the hospital is for me. My anxiety is such an immense force in my life that it prevents me from doing a lot of things but as scared as I was, I did it. I had to wait in the waiting room for over 2 hours and they took everyone else before me, even the ones that had just arrived. That just reaffirmed my fears of medical professionals not believing me. I've had so many bad experiences with doctors and that just made me feel all of those horrible emotions again. However, when I finally got called back I was pleasantly surprised with my doctor. The nurse was also really concerned and was very kind.
The doctor was a young woman who sat beside me and really talked to me about my medical history and what was going on. She apologized for my pain several times and was very gentle. She diagnosed me so quickly and gave me meds to help. She diagnosed me with Trigeminal Neuralgia, which makes so much sense. She also talked to me a bit about my previous diagnoses and my likely MS.
I was scared and anxious but I did it. I got help and I now have another diagnosis to add to my pile, and it's one that actually explains a lot of other things. It's best described as a chronic pain condition affecting the trigeminal nerve in the face and head. On paper it doesn't sound that bad but it's actually known as the Suicide Disease because it's the worst pain known to man. I'm not sure how they can say that because any pain is bad pain.
I've always had a lot of face and head pain, all on the right side, but I always attributed it to migraine. I do still have migraines but now I know this pain isn't just a prodrome.
You guys, I think this pain is what my lightning bolt attacks are. How amazing is it that I finally have an answer? It's a relief knowing this. I have a newfound sense of peace. It still hurts like crazy but knowing what it is makes me feel so much better.
Funny enough, TN is often an early sign of MS. I guess I'm getting that much closer to a diagnosis for that as well. I was hoping it would show up in my scans but I only had a CT so it wouldn't have shown up anyway.
I'll actually be seeing a doctor very soon. I have an ER follow up tomorrow and then I'll be seeing my new doctor soon. I already have a new primary care physician, who is also my Dad's and my parents both adore her, and I feel so proud of myself for being on this path now. I feel like I've done something I didn't think I could do. I know it sounds silly but if you've been following my blog for any length of time you know how difficult all of this is for me.
I started a new medication yesterday. I'm not sure I like it but I'll be patient and give it more time before I made a real judgment about it.
This website has a lot of great information about TN if you're curious.
I'm feeling hopeful. And I'm so happy about it. I'll update again soon with more.
On Monday morning I was struck with a pain so intense and violent I actually screamed out loud. I was in the produce department at my local grocery store and it terrified me. It came out of nowhere and I didn't know what to do. It was in my head but it wasn't a migraine or a headache or something that I could understand. I went about my day with it continuing every 5 to 10 minutes. I thought it was just something new that I would have to get used it. When I got home I took a Percocet and tried to rest but it didn't help. The pain continued and it just kept getting worse and worse.
I actually told Hunter goodbye that night and I left my parents a note telling them how much I love them. I was so scared. I thought my brain was bleeding or that I was about to die at any moment. The pain didn't stop. It was still there in the morning when I woke up. I was still alive so I figured I could just deal with it. If it didn't kill me I could recover from it. I've never known when the pain is enough to make me go to the ER. I have pain every single day of my life so what makes it bad enough or different enough to warrant a trip to the hospital? Well, I actually turned to Dr. Google for the answer. Don't ever google head pain. Trust me. It will make you think you're dying. Although, I guess since I already thought I was dying it just confirmed my fears. I was so scared I decided to go.
You guys know what a big deal going to the doctor or the hospital is for me. My anxiety is such an immense force in my life that it prevents me from doing a lot of things but as scared as I was, I did it. I had to wait in the waiting room for over 2 hours and they took everyone else before me, even the ones that had just arrived. That just reaffirmed my fears of medical professionals not believing me. I've had so many bad experiences with doctors and that just made me feel all of those horrible emotions again. However, when I finally got called back I was pleasantly surprised with my doctor. The nurse was also really concerned and was very kind.
The doctor was a young woman who sat beside me and really talked to me about my medical history and what was going on. She apologized for my pain several times and was very gentle. She diagnosed me so quickly and gave me meds to help. She diagnosed me with Trigeminal Neuralgia, which makes so much sense. She also talked to me a bit about my previous diagnoses and my likely MS.
I was scared and anxious but I did it. I got help and I now have another diagnosis to add to my pile, and it's one that actually explains a lot of other things. It's best described as a chronic pain condition affecting the trigeminal nerve in the face and head. On paper it doesn't sound that bad but it's actually known as the Suicide Disease because it's the worst pain known to man. I'm not sure how they can say that because any pain is bad pain.
I've always had a lot of face and head pain, all on the right side, but I always attributed it to migraine. I do still have migraines but now I know this pain isn't just a prodrome.
You guys, I think this pain is what my lightning bolt attacks are. How amazing is it that I finally have an answer? It's a relief knowing this. I have a newfound sense of peace. It still hurts like crazy but knowing what it is makes me feel so much better.
Funny enough, TN is often an early sign of MS. I guess I'm getting that much closer to a diagnosis for that as well. I was hoping it would show up in my scans but I only had a CT so it wouldn't have shown up anyway.
I'll actually be seeing a doctor very soon. I have an ER follow up tomorrow and then I'll be seeing my new doctor soon. I already have a new primary care physician, who is also my Dad's and my parents both adore her, and I feel so proud of myself for being on this path now. I feel like I've done something I didn't think I could do. I know it sounds silly but if you've been following my blog for any length of time you know how difficult all of this is for me.
I started a new medication yesterday. I'm not sure I like it but I'll be patient and give it more time before I made a real judgment about it.
This website has a lot of great information about TN if you're curious.
I'm feeling hopeful. And I'm so happy about it. I'll update again soon with more.
Sunday, August 6, 2017
Minimalism
I just watched a really great documentary on Netflix called Minimalism: A Documentary about the Important Things. It’s mostly about living a full life with less stuff, and if we need stuff to make sure they’re things that bring us joy, and making sure we are living our best lives by focusing our attention on what really matters, the people we love. While it is mainly about having less stuff to weigh us down I took a lot more than that away from the film.
It reminded me that I want and need to live my life deliberately and with purpose. I want to make sure that anyone and anything I bring into my life are adding value. I want to live a life that is good for me and for the people around me.
I think as an entire society we have placed too much importance on social media and how the world views us. The other day I was beyond excited that 127 people liked a photo that I posted of myself on Instagram because it made me feel pretty but I shouldn’t need social media to feel beautiful. My blog, Instagram, Facebook, and Twitter aren’t a piece of my identity. They do not make me who I am and I shouldn’t use them as a way to validate who I am.
Speaking of my blog, I often feel defeated when I see how many likes other bloggers get on their social media posts or how many comments they receive on their latest published post but it’s not a competition. Sometimes I even feel like I’m just not good enough when a company doesn’t want to work with me, but that’s not really an indicator of who I am or what I am. There can be a number of reasons they might not want to work me but it’s not something that should ever make me feel bad about who I am or what I’m putting out into the world.
We are all enough. We are all successful in our own unique ways. We are all exactly where we are meant to be and it shouldn’t matter how much money we make or how many comments and/or likes we receive from strangers on the Internet or what kind of car we drive or which designer clothing brands we wear. We can’t determine our value by looking at others or by being told what we are meant to be.
We are living in a world full of noise. Every single day we are exposed to constant interference from places that shouldn’t matter and it’s coming at us from every single direction. “Buy this” or “Wear this” or “You’re only cool if you do this” but none of it matters. All that matters is how happy we are with ourselves, how awesome the relationships we have with the people we love are, and how kind we are. Forget the latest fashion trends or beauty products, ignore what advertising and social media are trying to tell you that you should be, and simply live a life that makes you happy. Live your best life.
So many people are in search of bigger, better, more. So many people are living lives they can’t afford trying to “keep up with the Joneses” as they say. Things aren’t the key to happiness. Knowing yourself and loving with your whole heart are the keys that so many are seeking.
It reminded me that I want and need to live my life deliberately and with purpose. I want to make sure that anyone and anything I bring into my life are adding value. I want to live a life that is good for me and for the people around me.
I think as an entire society we have placed too much importance on social media and how the world views us. The other day I was beyond excited that 127 people liked a photo that I posted of myself on Instagram because it made me feel pretty but I shouldn’t need social media to feel beautiful. My blog, Instagram, Facebook, and Twitter aren’t a piece of my identity. They do not make me who I am and I shouldn’t use them as a way to validate who I am.
Speaking of my blog, I often feel defeated when I see how many likes other bloggers get on their social media posts or how many comments they receive on their latest published post but it’s not a competition. Sometimes I even feel like I’m just not good enough when a company doesn’t want to work with me, but that’s not really an indicator of who I am or what I am. There can be a number of reasons they might not want to work me but it’s not something that should ever make me feel bad about who I am or what I’m putting out into the world.
We are all enough. We are all successful in our own unique ways. We are all exactly where we are meant to be and it shouldn’t matter how much money we make or how many comments and/or likes we receive from strangers on the Internet or what kind of car we drive or which designer clothing brands we wear. We can’t determine our value by looking at others or by being told what we are meant to be.
We are living in a world full of noise. Every single day we are exposed to constant interference from places that shouldn’t matter and it’s coming at us from every single direction. “Buy this” or “Wear this” or “You’re only cool if you do this” but none of it matters. All that matters is how happy we are with ourselves, how awesome the relationships we have with the people we love are, and how kind we are. Forget the latest fashion trends or beauty products, ignore what advertising and social media are trying to tell you that you should be, and simply live a life that makes you happy. Live your best life.
So many people are in search of bigger, better, more. So many people are living lives they can’t afford trying to “keep up with the Joneses” as they say. Things aren’t the key to happiness. Knowing yourself and loving with your whole heart are the keys that so many are seeking.
Friday, August 4, 2017
Early August Update
I guess I can only be good at consistently posting to one of the blogs and lately I've been so good about posting every single Wednesday on Beautiful Basics and about once a month (or less) on The Sick Life. I do, however, have some things to update you on so let's get started!
My Dad has been in and out of the hospital lately and it's been tough on all of us. He's actually in the hospital right now and was in the ICU a couple of weeks ago. He hasn't been doing well. His cancer is still in remission but he's been struggling with a lot of other health issues. He also has Giant Cell Arteritis, and he's been being treated for it since November but the treatment was making him worse in a lot of ways so we've been trying some other things. He also has a severe B12 deficiency, but not the kind that popping a vitamin can fix. It actually looks a lot like dementia, and it's terrifying. He's been getting infusions for that but he's still very low. He's been having heart problems and breathing issues, as well. It's been rough but hopefully we'll get some answers from his care team this time around since they're not planning on releasing him without knowing what's causing all of this.
As for me, I've been struggling too. You'll be proud to know that I'm actually taking the steps to see my new doctor and will hopefully be getting in soon and starting a new treatment plan. I told you that I'd do it by the end of summer and I'm doing it! I'm still terrified but I'm working on it.
Speaking of working on things... I'm trying to be in control of my anxiety, more so than I have ever tried before. I'm focusing on bettering myself and the way I handle my stress and panic and I think I'm doing a fairly good job. I had a pretty bad panic attack in a restaurant earlier this week, and it carried over to the next day, but besides that, I think I'm getting somewhere and I'm happy with it. I've been organizing a lot, which is a great stress reliever for me. I've always been trying to change how I see things and I think it's working well.
Even though things have been leaning towards the difficult side of the life spectrum I've still been trying to make the most out of this summer. My Mom and I have been spending lots and lots of time in the pool. We've been kayaking a few times. Oh, and remember the new kayak I got for my birthday? I love it so much! It's awesome! I've spent some time reading, which I love. I'm totally on a Stephen King kick. I've always loved him but I'm getting more into him than ever before.
It's been a hard summer but like I always say, life is what you choose to make it and I'm choosing to make it happy and peaceful and calm. We may not all be healthy but my family and I are together, we have a wonderful home, the cutest cat and dog and the opportunity to take every single day that comes our way and make it a good one. I'm really feeling positive and hopeful, even if I don't feel very good. Life is good, anyway.
Okay, that's it for now. I want to post more and I promise I'll make an effort. I think I need to talk more about my anxiety and how bad it got for a while and go into more detail about how I'm trying. Oh, and my heart needs another write up because it's been having a lot of issues lately. I've also been fainting here and there. Fun, right? Anyway, see you then.
My Dad has been in and out of the hospital lately and it's been tough on all of us. He's actually in the hospital right now and was in the ICU a couple of weeks ago. He hasn't been doing well. His cancer is still in remission but he's been struggling with a lot of other health issues. He also has Giant Cell Arteritis, and he's been being treated for it since November but the treatment was making him worse in a lot of ways so we've been trying some other things. He also has a severe B12 deficiency, but not the kind that popping a vitamin can fix. It actually looks a lot like dementia, and it's terrifying. He's been getting infusions for that but he's still very low. He's been having heart problems and breathing issues, as well. It's been rough but hopefully we'll get some answers from his care team this time around since they're not planning on releasing him without knowing what's causing all of this.
As for me, I've been struggling too. You'll be proud to know that I'm actually taking the steps to see my new doctor and will hopefully be getting in soon and starting a new treatment plan. I told you that I'd do it by the end of summer and I'm doing it! I'm still terrified but I'm working on it.
Speaking of working on things... I'm trying to be in control of my anxiety, more so than I have ever tried before. I'm focusing on bettering myself and the way I handle my stress and panic and I think I'm doing a fairly good job. I had a pretty bad panic attack in a restaurant earlier this week, and it carried over to the next day, but besides that, I think I'm getting somewhere and I'm happy with it. I've been organizing a lot, which is a great stress reliever for me. I've always been trying to change how I see things and I think it's working well.
Even though things have been leaning towards the difficult side of the life spectrum I've still been trying to make the most out of this summer. My Mom and I have been spending lots and lots of time in the pool. We've been kayaking a few times. Oh, and remember the new kayak I got for my birthday? I love it so much! It's awesome! I've spent some time reading, which I love. I'm totally on a Stephen King kick. I've always loved him but I'm getting more into him than ever before.
It's been a hard summer but like I always say, life is what you choose to make it and I'm choosing to make it happy and peaceful and calm. We may not all be healthy but my family and I are together, we have a wonderful home, the cutest cat and dog and the opportunity to take every single day that comes our way and make it a good one. I'm really feeling positive and hopeful, even if I don't feel very good. Life is good, anyway.
Okay, that's it for now. I want to post more and I promise I'll make an effort. I think I need to talk more about my anxiety and how bad it got for a while and go into more detail about how I'm trying. Oh, and my heart needs another write up because it's been having a lot of issues lately. I've also been fainting here and there. Fun, right? Anyway, see you then.
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