Last June Update

I wasn't planning on doing another post this month. I was thinking that monthly updates (over on Beautiful Basics) would be enough. What do you think?

However, I have a little bit of an update. I went to see my doctor last week and it was another good appointment. Even she was appalled at what the Rheumatologist had said to me and the notes he sent her. She kept apologizing. It's good to know that even she thinks it was ridiculous.

She upped my medications again and added in another. I'm struggling with the increase but I'm giving myself a full month before I judge it.

There's even more at night but this (with a filter that I thought was pretty) is what my mornings now consist of:

I feel like it's so much. I'm 31! And you know what I just realized? I have no clue what kinds of things lurk in these pills. Are there other ingredients that are in medications? Or is it just the active? I really don't know and that's kind of scary. Am I being weird? Probably. I guess all that matters is if it works or not and if it works I'm totally fine with it. The side effects right now are not fun, though.

My body feels so heavy. It's like my feet are in cement blocks and I'm having to go through my day dragging them. I've also started speaking really slowly and I've somehow developed a terrible stutter. I haven't been able to come up with words, even more than normal. It's kind of embarrassing. I've even gotten so upset at times I've just stopped speaking and started crying. I've always been shaking and tremoring more than ever. I have hope that I'll get past this in a couple of days.

I've been feeling pretty positive overall, though.

As for life, we went kayaking for the first time this season. I missed it so much and it felt so good to get out on the water. I hurt like crazy the next day but being out there in nature was good. We went to our absolute favorite place, which we end up going to at least a couple of times each season. It's one of my favorite places in the entire world. And, we had a little car trouble and ended up having to stop at the casino nearby and I won $220. How cool is that? I don't gamble, normally, but it was fun.

For the last bit of news, I'm going to the dentist tomorrow for the first time in an embarrassingly long time. I'm terrified. I don't know how having Trigeminal Neuralgia and going to the dentist work together but I'm hoping the doctor I'm going to see will know what TN is and how to work around it.

That's it for now. Please let me know how you're all doing, though. I'd love to hear how you are or how your summer is.

Seeing the Rheumatologist

I finally got to go see the Rheumatologist earlier this week. It was an incredibly strange appointment. He never examined me. He didn't want to run any tests. He didn't even really ask me many questions. He came in and told me I don't have Lupus, nor could I ever have Lupus. He told me I have Fibromyalgia. Good work, Doctor. I was diagnosed with that years ago, and again months ago.

I guess a 3rd diagnosis is necessary in some situations? He then told me that everything that's wrong with me is because my brain doesn't get enough deep sleep.

He then went on to ask me if I had ever been on any medications, including two that I'm on. When I told him I'm already taking them he seemed shocked. The man didn't even read my information that I took days filling out. He's going to recommend some things to my primary, like sleeping pills and more muscle relaxers.

He also suggested that I do less and spend all of my time resting. I guess becoming lethargic and lazy is a good treatment.

I don't mean to sound how I'm sounding right now but it really wasn't a good appointment. He came in and spent 45 minutes preaching to me about the same theory over and over. It was the kind of appointment that made me stop going to see doctors in the first place. I gave up on trying to ask any questions or get any real information out of him about halfway through the appointment. My Mom gave up even sooner. There was simply no point in even trying. I made it through the appointment without breaking down, nodding at the appropriate moments, thanked him at the end, checked out and then burst into tears as we walked through the front doors.

It wasn't that he took away my Lupus diagnosis. You know I never really thought I had Lupus in the first place. It was his better-than-thou, condescending, preaching, rude attitude. I don't know. I just don't react well to that sort of treatment. And the fact that he told me I've been sick (temporarily in his words) for the past 9 years because I'm not getting deep enough sleep.

I've been doing a lot of research lately, as per normal, and I thought maybe it could be Lyme Disease. I asked him if he could test me for it and he said, "oh no, I've been doing this for 20 years and I've never seen anyone with it so you can't possibly have it". What the actual hell?

He's the second doctor to tell me that my Fibro comes from PTSD from some event in my lifetime. They don't ask me if that could be, they just tell me that it is. I don't have PTSD. I haven't lived through some terrible thing that caused me to be sick and miss out on my 20s.

He also weirdly told me that my Trigeminal Neuralgia has nothing to do with anything but it's likely caused by Herpes. He clarified he didn't mean genital herpes, just one of the hundreds of strains of herpes that exists. He told me I should ask my doctor about the medications I'm already on and try them. I have NEVER read anything about herpes in my TN research and even my doctor admitted that I'm a near expert and know more than her about TN.

Guys, guys... get this: He looked at my Mom who very clearly, and very visibly, has RA and said she doesn't have RA but instead also has Fibro.

It's frustrating but I'm over it. I really am. Obviously, I just wrote this to share but I've moved it out of my brain. I don't want to dwell on things and let them fester so I've kicked this out of my mind. I just had to share how stupid it all is.

May Update

I had to go back and look at what I posted last. It's been a while. The main reason for that is the fact that I've been feeling pretty upset about my healthcare and my health in general. The appointment I had in late March didn't go very well. I didn't feel heard and feeling listened to is what I need most. I had an appointment this week, though, that was the complete opposite. I felt more than heard. I felt understood. It was exactly what I needed and I'm really glad it was the way it was.

My appointment in March, other than being not good, was when I was diagnosed with a Lymph Node infection and was put on some pretty heavy antibiotics. Nothing changed after the antibiotics, though, and with how low my White Blood Count was I'm still a little concerned. I'm putting that to the side for now.

In my appointment this week I was really anxious, to the point of nearly hyperventilating in the waiting room. I even had a ridiculous and embarrassing bright red and angry rash all over my chest and neck. I worked really hard at trying to calm myself down and, if I may say so myself, I think I did a great job. I've been working on getting my anxiety under control lately. By the time I got into the exam room I was as calm as I could be. I had a wonderful nurse who made me feel even calmer. He was one of the best nurses I've had, actually. I have figured out that I just need to tell them straight off that they'll need to come back and take my blood pressure at the end of my appointment. It's always so high before I see my doctor and much more normal at the end. They always take it once and are so surprised to see how high it is and then laugh at how normal it is at the end. The waiting part is always the worst part. Of anything, really.

This appointment was to talk about my Fibromyalgia. Once my doctor came in we had a really good conversation. We actually talked and laughed, too, so that's nice and really helps me not feel so anxious. The actual medical part was great, too, and she ended up prescribing me the medication that I had wanted. I'd actually asked her if it would be right for me months ago.  I now take Gabapentin, which is also known as Neurontin. This medication is beneficial for both Fibro and Trigeminal Neuralgia. By the way, my TN was so much better with Baclofen until it wasn't. The pain has been creeping in and getting worse. I haven't been on it for very long (only 3 days) but I'm already seeing a difference so I'm hopeful that it will work well for me.

Funny enough, there are 5 of us in my household (animals included) and 3 of us now take it.

Anyway, it was a good appointment and I'm thankful that it went so well. I really can't handle bad appointments. After so many years with bad doctors I just feel like I'm incapable of dealing with that any longer. You know what I mean?

As for life, it's been pretty good.

The weather is finally nice and I've been spending a lot of time outdoors. The school year is almost over, which will be wonderful. I love having my Mom home for the summer. My Dad hasn't been well but we're working on getting him better. Hunter has been really sick, too. I took him to the vet and we didn't get any answers. I've been doing so much research but he's not getting any better. We're working on him, too.

When it comes to blogging I've once again fallen out of love with Beautiful Basics but I'm thinking after I get a few posts with a timeframe on them out that I can take a break and rediscover how much I enjoy it.

I have an appointment with the rheumatologist on the 4th so I'll be sure to update again after I see him.

Discouraged

I'm feeling a little bummed out and discouraged. My blood tests came back a little weird so I had some more and every single test came back negative. Including the test for Lupus. I've always said I don't think I actually have Lupus but I know I have more than just Fibromyalgia and Trigeminal Neuralgia. Although, it's funny, the other day I was reading a new website about Lupus and it actually sounded like it could be me. Although, I've never had a remission. Lupus is all about flares and remissions and I've been in a flare for 8 years. So for now, my levels are off but with no reason why just yet.

I was feeling so hopeful because I felt that much closer to actually having answers but I now feel a little lost. It's been 8 years of getting worse and worse. We might all like to say that labels don't matter in real life. It doesn't matter what we are labeled or what we label others. I agree but when it comes to health it does matter. A label, a true diagnosis, would make me feel so much better. It would make me feel validated. It would make me feel whole. Not that I'm not whole now. I have a happy life with people who love me. I'm whole in that sense. I'm not whole medically. I need answers. I also need help. I want to be fixed and normal and whole.

I'm really hoping that once warm weather hits I'll start feeling better. I always feel a bit better in the summer but this is my first summer on all the TN meds and the Carbamazepine has changed a lot.

I finally got approved to go see the Rheumatologist. My appointment is in June. June! Oh well, I've waited this long so I guess I won't have any problem waiting 3 more months.

Excitement and Betterment

I just had an appointment with my doctor. I am so grateful for her. She is so kind and understanding. She's the kind of doctor I have needed all along. I had a 20-minute appointment that turned into about 40 because I had a lot of questions and ramblings. I'm nuts with medical research so I had a lot of things to talk about.

She raised my muscle relaxer and is working on getting the insurance to approve me seeing the Rheumatologist. I had a lot of blood work done and then we'll talk more about other medications next month.

It doesn't sound like we got a lot done but we really did and I feel good about. She is such a genuine human being who is easy to talk to and makes me feel not only listened to but heard, and understood. It was a good appointment.

I have a couple of other things I want to talk about because I'm excited about them. I was experimenting with food and seeing which foods made my body feel good and healthy and strong. I'm one of those people who believes that food is medicine and it should make us feel better, not worse, so I am now a gluten-free vegan. Every time I ate wheat I realized how shitty (hope you don't mind cursing) I felt afterward. I've been gluten-free for over a week now and vegan for only a few days, but I have no doubts that both will stick for good. I've been a vegetarian for 15 years-ish and going vegan is easy from there. I'm also going to cut back on sugar but I'm going to put that off for now. I don't want to throw my body into shock. I skipped adding sugar in my coffee yesterday (black isn't so bad) and I felt a little weird all day. Besides the sugar fiasco yesterday, my body already feels better and I'm excited to see what comes next.

I just placed a huge Vitacost snack haul, but to be honest I'm more interested in eating whole, clean foods like fruit and vegetables. We all need a chip or a sweet every now and then, though, so I'm eager to try everything I ordered.

Don't worry. I don't believe in preaching my food beliefs. Eat what you want and I'll eat what I want. I don't understand those vegans who are absolutely cruel to meat-eaters. We all get to make our own choices and I'm proud of mine. Don't ask me where I get my protein. I don't really care where you get yours so don't ask about mine. LOL! Have you seen the memes? They're true.

One thing I will say, though, is have you seen the documentary Forks Over Knives? I can't recommend it enough. It really changes one's perspective about food, even my former meat-loving, ice cream craving Dad. It's incredible.

Maybe 2018 will be the year of bettering my body and building health from the feet up. Maybe I will finally be able to get my pain and my health under control.

January

I can't believe I haven't posted since I shared how wonderful my Christmas was. January seems to have flown by so quickly and I'm just behind at everything.

I had an appointment with my doctor a couple of weeks ago and I have another one on the 13th of this next month. First of all, I'm always afraid to share my "medical knowledge" with my doctor but she is so open to whatever research I have done. TN is so rare and it's very possible that I'm the only case of it in the town where I live. It happens to 1 in 100,000 people and there are not even half that many people in the city where I live. In fact, I just looked it up and there were only 66,016 in the entire county in 2015. I doubt it's gone up much more than that.

With that being said, I've obviously done a lot of research about this fairly rare thing I've got wrong with me so I feel like I'm pretty much an expert on it. So, when we sat down I asked her if a couple of medications would be right for me and she prescribed one of them that day. She put me on muscle relaxers, 3 times a day. I was so happy in the first week because the pain was very nearly gone. It's slowly gotten worse again, though. I think the muscle relaxer does help but the dose absolutely needs to be increased. This particular med also helps with Fibromyalgia pain, too.

She's going to add in another medication during the next appointment but didn't want to put me on too many new things all at once. I'm looking forward to the next medication because I've read so many good things about how it has helped so many people. My Dad is actually on it, for another reason, and he thinks it helps a lot.

My pain is really bad right now, though. Really bad and constant. I hate Trigeminal Neuralgia. It's not right to have to live with this kind of pain.

Oh, and you know how have I have Lupus? Well, I asked her to refer me to the local Rheumatologist so I could start being treated for my Lupus again and my insurance company declined it. So, I'm disabled because I have Lupus (among other things) and have the insurance I have because I have Lupus but they won't let me go see a Lupus doctor? Isn't that just the most idiotic thing you've ever heard? I'll let you know what comes next. My GP said she isn't comfortable treating Lupus, which is totally fine because she's not a specialist, but I'm not sure what needs to happen.

I had pleurisy for about a week, which was incredibly painful. That's when the tissue around your lungs become inflamed and it makes it hard to breathe. I couldn't get comfortable and it was not a fun experience. I feel like I was super close to getting pneumonia but I started to take elderberry syrup and it might be magical. I don't know, though.

What else is going on in my life? I'm not really happy with Beautiful Basics. I'm not interested in trying beauty products which is a problem when you are a beauty blogger. I'm just so happy with the cosmetics and beauty products I currently have and want to use them all. I don't really want to have other things when I have gotten my collection down to only things I really want to have and use. The closet post that I was SO excited about didn't really go over well so trying to do more posts like that probably isn't a good idea.

Everything else is going well, so that's the January update. I'll let you know more about everything as soon as I know anything.

How are you? Did you have a good start of the year?

Christmas 2017

I did actually intend my previous post to be the last of 2017 but my Christmas was so special I felt I just had to share, if not just for myself so that I can one day read this back and remember how magical the day was.

I wrote this on Christmas day:

I have cried so many tears today, all of them happy. Life and all life encompasses, is such a precious gift, and the people we choose to love are the best gift of all. I am grateful every day for my parents, for all that they are and all that they do. They are truly my best friends, my soulmates. I don’t think that word is only defined in a romantic sort of way because I know my Mom and Dad are mine. They are my people and I am extra thankful for this special day we were able to share. Time is fleeting and days are never promised to any of us, and after the year we have had my heart is so happy and so filled with love and pure joy. Our traditions are wonderful and the gifts were incredibly beautiful and thoughtful but most of all, we are all here. We are all together. We were able to spend this Christmas laughing, sharing, being silly, being emotional at times and just simply loving one another with all of our hearts. I am so grateful, today and all days. I know how lucky I am. How lucky we are to have each other. I say this every year, but this year really was the best Christmas. I have been very fortunate to have a happy, love-filled and special Christmas for all 30 that I have been on this Earth but today was the best one of all. I’ll remember today for the rest of my life and I’ll carry the way this day made me feel with me in my heart forever.

Here’s to making 2018 something special, and the hope that we’ll create countless precious memories full of love and light.

The Last Post of 2017

I think an update is in order since it’s been a while since I’ve posted. My brain has been all over the place so you can expect this post to be, as well. I can’t seem to get my mind to slow down enough to have one thought at a time. Instead, it’s like my brain is throwing a million different ideas at me in a single second. You obviously can’t see this since I’m sharing a final draft and not what it looks like right now as I’m writing it but I started this post 5 days ago and I have so many separate thoughts and ideas going on. I’ll write one thing and then get another thing in my head that I want to say so I’ll start a new paragraph twelve spaces below. Hopefully, by the time you read this, it’ll be one coherent blog post.

Anyway, I’m through the toughest part of the medication increase, I think. I’m not wobbly (or any more wobbly than I usually am, LOL) or super slurry with my speech so I’ve made is passed that awful stage of medication increase. I’m still in a good amount of pain and no doctor’s appointment on the books yet because she’s still away. I am, also, still experiencing trouble with my vision and problems with my memory and brain. My memory is defective.

My poor brain has struggled since I first got sick but it’s worse than ever. And I keep getting so frustrated. Sometimes I ask the same questions over and over again. I can’t remember things I’ve just been told or people I’ve met multiple times and I can’t recall words. I’ve had issues with my speech and words since I first got sick but it’s just getting worse and worse. I always seem to just draw up blank and it gets me down. I’m trying to learn coping mechanisms, though.

For example, in the shower, I often forget if I’ve already washed my hair and end up washing it several times, so I now look for the suds on the ceiling and that will tell me if I’ve already done it or not. Don’t ask me why I shampoo my hair so vigorously that shampoo bubbles end up on the ceiling because I can’t give you an answer but I’m glad I do because they give me visual confirmation that I can move on to the next step. I guess that’s kind of a weird example to share but I’m trying to come up with clues like that for most things. I might not be able to remember a lot but at least I can find signs to help me out. Forget diamonds, coping mechanisms are a girl's best friend.

I’m still really frustrated, though. Especially when I’m trying to have a conversation and I have no words or I open my mouth to try to speak and I just make some weird noises. I’m not a seal, obviously, but sometimes I sound like one. Half the time I laugh at how silly I sound, but sometimes I get pretty sad. When I’m feeling really upset I like to mention how smart I used to be but that doesn’t do me any good. I’m still smart, I’m just different now. Like I always say, this is my new normal and I just have to accept it.

Speaking of acceptance, my hair is falling out. I got so frustrated with it right before Thanksgiving that I chopped off about 6 inches on my own. I normally cut my own hair and I've been doing it for years and years but I messed up. It was so ugly. I cut my own hair because a salon + my anxiety don't mix so my Mom asked one of her former students is she would be willing to come over and fix it. She did such a great job and it looks better than it has in a long time so the whole thing ended up as a win. I'm always so appreciative of people who are kind and understanding about my anxiety and it always warms my heart.

Moving on, I got recertified for disability. I didn’t mention it before but my interview was the day after my MRI. That really added to the stress of the week but thankfully I was approved. It was stressful, thinking that I wouldn’t be able to pay for things. My family would support me fully, no questions asked, but I like being able to pay for my room and board. I like taking long showers and soaking in the bath for hours, and that right there is expensive alone. Not to mention my food and electricity and just living, you know. I don’t receive much money each month but it’s enough to help and that helps me feel better about my financial situation. I don’t ever like to really mention that I receive disability because I’ve seen and heard a lot of people say horrible things about those who receive disability. I’ve seen friends of mine on Facebook say that people shouldn’t receive money for being disabled, especially when they’re young, but you know what? I need help. And if I was still able to work and anyone else needed help, whether I know them or not, I wouldn’t mind paying taxes into government funds to make anyone’s life a little easier.

Oh, the reason I brought up the disability interview is because it was with a psychologist, the same one I saw 3 years ago for my original interview. He is a very kind and warm man, which makes the process a little easier. He said I would probably see him again in 3 more years. I should have known when he said those words that I would requalify. Anyway, he asked me a question which made me understand something I hadn’t before. He asked me if my pain causes my anxiety to be higher and it was then that I realized that my anxiety comes directly from my illness. My pain and confusion and memory issues and weakness are what cause me to be anxious. It makes so much sense. I never thought about that before. I was never anxious before I got sick. I was brave and outgoing. I was super social and loved meeting new people and talking to strangers in public. I was such a different person back then (again, not in a better way, just a different way) and I never understood where the anxiety sprang up from.  It’s just nice to understand my symptoms a little better.

Something else I’ve been thinking about a lot is how my Grandma was sick. My Mom’s Mom was one of my favorite people in the world and I miss her and my Grandpa every single day. I think about them so often, especially at the Holidays. My Grandmother was sick, like me. She died of Congestive Heart Failure but before that, she had a lot of symptoms similar to mine. She also suffered migraines. She likely had undiagnosed Parkinson’s Disease. She tremored and shook, like me, but worse. She probably had an autoimmune disease. Maybe she even had Trigeminal Neuralgia like me. I'll never know. I wish she was still here for a million reasons, but I also wish I could ask her questions about her health. Maybe I could understand my health problems more by knowing about her health problems.

The final thing I want to talk about today is my Dad. My Dad was gone for almost a year. He wasn’t physically gone but he wasn’t here. I know that is really hard to understand. He was put on a medication last November that took him away from us. He wasn’t himself, at all. I really thought he was going to die. My Mom thought he was going to die. He even thought he was going to die. It was a really hard year for that reason alone. He doesn’t really remember the past year whereas my Mom and I do, but that part of our lives is over now and he’s back. My Dad is here and he’s happy and healthier and we’re getting along and being a family again. I couldn’t be happier. All I need in life is my family and now I have my family back again. The cancer is still gone, too, by the way!

That was a lot to throw at you. Sorry about that. Like I said, I had a lot of stuff floating around in my brain and now it’s out!

One last thing I need to put out there is a big thank you to those of you who read my blog and/or blogs. Sometimes my writing is all that I have, besides my family of course, and I really need it. I want to say an especially big thank you to the former student of my Mom’s who wrote such kind and lovely words about what my blog and what I've written. You made me cry, in the best possible way, and I am very grateful for what you said.

Okay, that’s it for now I guess! Can you believe Christmas is almost upon us and the fact that it’s almost 2018? Where does time go? Please leave a comment telling me how you’re doing and what you’ve been up to! I’m sure not all of you celebrate Christmas but Merry (early) Christmas to those of you who do and Happy New Year to all of you!

I'm feeling happy and positive. I've been reminded of what really matters in life and I have a feeling 2018 is going to be incredible. I can’t wait to see what it brings all of us! Remember, life is what we decide to make it. Talk to you all in January!

The MRI Update.

I've been in so much pain lately. I haven't spent much time out of bed or off of the couch. And last week was a particularly difficult week for me. The pain was so extreme I could hardly handle it.

I had my MRI, though. I had a full-blown panic attack and it was really hard for me to be completely still for the almost 2 hours I was lying in the tube. I made it, though. And my results came back the next day.

My MRI was clear. There is nothing wrong with my brain. I do not have MS.

And I was disheartened, upset, and disappointed. I know that being angry about not having MS is the craziest kind of crazy to ever be but having MS, like I thought I did for so many years, was an answer and it was the answer that made sense. I thought that when I was diagnosed I would be put on a plan of treatment that would maybe help me feel better and live a normal life, but in the end, that wasn't the case.

It turns out that my original diagnosis is actually the correct diagnosis. I do have Lupus and Fibromyalgia, and then the recent addition of the Trigeminal Neuralgia.

If you're new to The Sick Life and aren't familiar with Lupus or Fibro but you follow pop culture then this might make it easier for you to know what they are -  Lupus is what Selena Gomez has and Fibromyalgia is what Lady Gaga has. They’ve both been in the news for their conditions a lot lately. Selena Gomez had to have a kidney transplant because of her Lupus and Lady Gaga had to cancel her tour because of the pain from her Fibro.

Anyway, I guess we’re back to square one. None of the medications I was originally on worked and they actually made me worse. That's part of the reason I didn't think the diagnosis was accurate. The treatment plan I was on is pretty much the only plan of treatment there is for my conditions. But I’m going to be referred to OHSU and maybe we’ll find a solution that will work for me.

As for my extreme pain at the moment from my TN, my doctor upped my medication again. She had to leave the state for a family emergency so I no longer have an appointment this week, or in the next month, but I'll probably see her in December and she'll add more medications then.

Oh, and remember my Ozzy Osbourne update? I'm kind of back there again, albeit not quite as bad. I already feel that I'm balancing out a bit, though, so we'll see what happens. I'm giving myself 10 days before I cut myself back again if I don't go back to human. Since the pain is still around there's no point in being a walking zombie! But I'll keep you updated.

The 10/9 Update

I don't have much to tell you right now but I wanted to tell you about the appointment I had with my new primary care physician last week. I really liked her! She's great. She was very patient, warm, kind, and made sure to listen to what I was saying. She made me feel very comfortable. She put in an order for an MRI with and without contrast so that's what is next on the agenda. We need the MRI results before we can do anything else. She wants to put me on Gabapentin and increase the Carbamazepine for my Trigeminal Neuralgia pain but, again, the MRI needs to happen first. She's also going to refer me a neurologist. I see her again in 4 weeks and I'm hoping I'll get the MRI this week or next.

It's so weird because my biggest fear right now is that the MRI will be clear. Most people would wish and hope and pray for that but I've been so sure for so long that I have in MS that if it comes back clear it will be really frustrating. It will essentially mean we'll have to start all over again but if it is MS then maybe I'll finally be on the path to feeling better. I don't know. My feelings on this subject are complicated but I do fully understand that whatever happens next is what happens and I'll deal with it as it comes. Life is what we make it.

Oh, one final thing - My blood pressure wasn't just high at my appointment. It was emergency crisis high. They took it 5 times to make sure and it never ended up in the 30-year-old woman normal range but it was better before we left. The first time the nurse took it it was 186/164. It ended up at 142/83. My pulse rate was in the 130's and I had a small fever. I'm a mess, LOL. I also got my flu shot and a Tdap (Tetanus, Diptheria, Pertussis) vaccine, which killed my arm! I don't mind shots but Tetanus shots are mean.

Anyway, I like my doctor and we're on the path to figuring this out. Maybe I'll have more to report soon.

Things have calmed down a lot since my last update. My body has gotten used to the medication so all of those horrible symptoms I’ve mentioned have kind of dissipated. Now that the side effects aren’t so awful it has really helped decrease the level of my pain. I’d say it’s about 60% better. I no longer have those horrible, crippling lightning bolt strikes through my brain that I’ve had for years, and that in itself is something I am incredibly grateful for. Those were so terrible, I don’t even think I can describe them fully. They were ruining my life and to have them be gone is incredible. I get occasional “kicks” but I’ll take those instead of bolts of electricity any day.

I still have pain, though. Some days are worse than others and it’s a different kind of pain. We’re just talking about the Trigeminal Neuralgia today. All of my other pain has stayed the same. All of my other symptoms are the exact same so we’re just talking about that damn nerve in my head. How do I describe the pain? I guess it’s kind of an aching, nagging, constant pain covering the entire right side of my face and head. Again, it’s better than what I was dealing with before so I’ll take it. I’ve lived with pain for a very long time and I can handle this.

I've had to change a lot of things, though. I can't eat anything chewy or crunchy. I can't touch my face. I can't be out in wind so I have to wear hats and beanies. I think there's a lot more to it than that but I have to be really careful.

Oh! I have really good news! I have an appointment to establish care with my new Primary doctor on the 5th! I am so excited! I’ve been waiting, as you know, and I feel like this is a step in the right direction. I hope this appointment is just the first step in many to get me the right diagnosis. It’s been a long time coming and while I do feel a bit anxious about what awaits me, I’m also feeling really hopeful.

It’s been years of wrong diagnoses and wrong medications and I hope she can figure this out and get me on the right plan of action. What if she does and then I start feeling better? I’ve been sick for so long that I can’t even imagine feeling well. I’m 30 now, 22 when I got sick, so I pretty much missed out on my 20s. What if I get to truly experience my 30s? I’m getting really, really ahead of myself here but it’s just such an exciting idea. There’s potential there and potential isn’t something that I feel like I’ve had in a very long time.
Although, if I’m right about what I have (and let’s be real, I probably am because I know my body better than any doctor ever could) I don’t have a lot of time before my body stops working. Everybody and every body are different, and I don't even have any definitive answers. I’ll try my best to be patient and see what happens.

Another thing I want to mention is how calm I have been lately. I don’t know if this anti-seizure medication I’m on has some sort of benzodiazepine component to it but my anxiety has been so much better lately. I mean, it’s still there but I’ve seen a huge improvement in the past couple of weeks.

I don’t think I have anything else to add right now. Well, maybe that it’s cold and being cold is so hard on my body. My pain gets a lot worse when it’s cold. Maybe not worse, I guess it's just different. I'm so temperature intolerant. And of course my Raynaud’s is at its worst in the colder months so my fingers and toes are just constantly blue but lots of baths and warm clothes helps. Anyway, I guess that’s it for now.

The Ozzy Osbourne Update

Well, I've had a rough time since my last update. The doubling of my medication got rid of the pain but it also got rid of me. I couldn't see or walk or speak or stand or feel anything at all, hence why the pain was gone. It was awful. Did you ever see that show with Ozzy Osbourne and his family back in the early 00's? I was sort of like Ozzy, but even worse. I can't truly describe how bad it really was. I can't even begin to tell you just how bad.

My speech was so slow and slurred that my family could hardly even understand me. I couldn't walk without falling down. I could hardly sit up even. I couldn't really eat because I was so sick to my stomach but when I could I would end up throwing the food all over myself because I had little to no muscle control.

I kind of thought it was just another adjustment phase but every day it just got worse.

The only good thing was that my anxiety was essentially nonexistent. I couldn't feel anything so I was very calm. Is that a plus? I'm not sure.

Anyway, I decided along with the help of my family that I needed to cut back the dosage to what it was when I went to see the doctor last week. I feel more human and much more myself but the pain is creeping back in. Actually, it's not creeping. It's here and throwing itself a parade every second.

I actually just don't think this medication is right for me. This dose isn't enough and the next dose is way too much. And even though I'm feeling more like myself I'm still not feeling very good. My vision is still really off and it makes my stomach hurt a lot, not like it was but still enough to be a problem. I think the side effects are greater than the benefit.

I'm still on a waiting list for my actual doctor though and should be able to see her in a month or so. I hope I can deal with the pain that long. We shall see.

Understanding and Medication Doubling

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?

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.

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.

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.

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.

Update

Often on the internet, we share the best things we have going on in our lives but we never share the real issues and the difficulties we're experiencing in the real world. That’s part of the reason I created The Sick Life. Life is beautiful but it’s never perfect and we should never think that someone else has a flawless and glamorous life full of sunshine and rainbows because that’s what they choose to show us on social media. Life is also messy, and it can be tough sometimes.

Things have been very difficult for me, and my family, recently. I haven’t posted much because I didn’t want to pretend that things were going well. I’m not going to go into too much detail right now but my Dad hasn’t been doing well and it’s been really hard on all of us. He’s on the mend now, though, and things are slowly but surely getting back to normal. One of the hardest things in life is to watch a family member struggle. I was so afraid, for so long. I guess I still am because I know one day I’ll have to say goodbye and my heart already hurts so much thinking about that, but one day is not today and hopefully not tomorrow. He’s doing better now and I’m going to make the most out of the time we have now. All we can do is love, and love is what I’m doing.

As for me, I’ve also been struggling. I have never been in as much pain as I have been this last week. I’m still in it, unfortunately. Every day I expect to wake up feeling better but that hasn’t been the case as of yet. I’m very scared of becoming dependent so I try not to take them very often, even when the pain is severe, but I’ve been taking multiple pills every day. I’ve never experienced this amount of pain before and I hope I won’t have to again.

I was in the shower a few days ago and it struck me so hard all at once that I doubled over and had to curl up in a ball on the shower floor. I couldn’t move and I had to call my Mom for help. It just happened again only not in the shower this time. It’s been so constant for several days and I just don’t understand what it is. I think one of the most difficult things with chronic illness and pain is that I don’t know what pain means I should go to the hospital. I just don’t know what pains mean I should go and which ones mean I should just deal with it at home. You know what I mean? I’m always in pain, granted this one is worse than normal, but what do I do?

My Dad is getting better so hopefully, I will too. I'm hoping everything will be perfectly normal by this time next week.

Anyway, that's it for now. Have a great weekend! 

What to do with Beautiful Basics?

I’m feeling sort of unhappy with Beautiful Basics and I wanted to talk about here, on The Sick Life, before I made any big decisions or changes. Blogging about natural beauty has been a saving grace for me other the past 6 years and 2 months. I can’t believe how much time has gone by and how much my little blog has grown in that time. I’ve truly enjoyed creating for Beautiful Basics even though there have been some highs and lows but I’m not enjoying it right now.

As I have become more and more ill my sensitivity to smell (not just chemical or artificial fragrance, it’s ANY smell - including essential oils) has gotten more prominent. I’ve also developed a lot of skin sensitivities so a lot of the time when I’m sent skincare products to try my skin freaks out and gets really sore, red, irritated and inflamed. I usually have to spend weeks trying to get my skin back to normal. I’m at the point where I just need to step away from trying new skincare. And body products, and hair products, and anything that comes in contact with my skin at all. Or anything, really, that has any kind of scent.

So that leaves the question of what becomes of Beautiful Basics and this is where I want your advice. Do I turn Beautiful Basics into a natural makeup blog? Or, should I become a cruelty-free beauty blog? The second option is where I’m leaning. There are so many brands who are cruelty-free with products made of pretty good ingredients that don’t qualify as “natural” or “green”. I’ve slowly been transitioning into more brands found at Sephora and maybe that’s the kind of stuff I should start focusing on. Of course, I won’t use products with parabens or anything totally scary and/or toxic but cruelty-free is what matters most to me these days.

I’m kind of at a crossroads and I’m not really sure where to go from here. What I do know, however, is that I’m not really happy with the whole situation now but I don’t really want to quit. Would you stay with me if I transition to being a cruelty-free beauty blog with a focus on cosmetics instead of a natural beauty blog?

My .

I can’t believe I’ve never talked about my period on The Sick Life before. Well, maybe I can because for some reason although half the population of the planet gets a period it’s something that is taboo to talk about. Isn’t that weird? It’s a totally normal thing and yet it’s not something we can freely, or comfortably, talk about.

Anyway, I think it’s an important topic because how do we know what’s normal and what’s not if we never share these things. I know my period isn’t normal. It’s not easy. It’s extremely painful.

I started having my period when I was 14 and it wasn’t easy then but it’s definitely gotten more difficult with age. My period isn’t regular so I never know exactly when it will be arriving but once it does my body goes to war and I am taken out of the game for a couple of days because I am usually in so much pain I can’t even stand upright.

This month my period was actually the most painful it’s ever been. I spent an entire day curled up in a tiny little ball on the couch in the living room. Painkillers didn’t help and nothing seemed to ease the terrible pain I was experiencing. When I tried to get up and go into the dining room for dinner I was doubled over in excruciating pain. It hurt so much I lost control of my body and went into the rigors (uncontrollable shivering/shaking) and cried and cried and cried.

My period is also quite heavy in the first few days and I have abnormal clotting. Sorry if that’s TMI. It makes it really hard to function normally for about 5 to 6 days. I need lots of warm, salty baths and a heating pad strapped to my body at all times. I’ve found that drinking more water than I normally do (and I’m a big believer in drinking a lot of water, regularly) helps a lot but it only helps the flow and not the pain.

Well, there we go. That’s our slightly TMI topic of the day. Do you have an abnormal or painful period, as well?