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? 

Goals for the Next Chapter of my Life

I’m 30. I can’t believe it! I don’t feel old, or anything, but I’m so happy to be continuing on the journey called life in a new decade. I never really thought I’d make it here so the fact that I am officially 30 years old is something I’m really proud of. Maybe it’s silly to be proud of turning another year older but I really do feel like it’s an accomplishment because it’s something so many people never get lucky enough to do. It’s an honor and a gift that I am looking forward to using as fully as I can.

Even though I’m happy with who I am as a person I believe we’re all works in progress and we can always try harder and learn more. I have some things that I’d like to conquer in an effort to make myself the best that I can be so I thought I would share those things with you all today.

This year I plan on spending as much time as I possibly can with the people I love. I want to make the most of the time that we have and dedicate myself fully to being with them and truly hearing and listening to them. I want to ask as many questions as I can and get as many answers as I can. I do spend a lot of time with them and I already have so many wonderful memories but I need more. We all need more time with the people we love.

This year I hope to be more patient. It’s something I’m constantly trying to work on because I have a terrible tendency of becoming impatient; especially with the people I love most. Life is short as is our time here so I want to spend that time being as kind, generous, open and patient as I possibly can be. There’s no need to have a short temper but there is a need to be tolerant and understanding.

This year I hope to have better control of my anxiety. Anxiety is not my friend. It’s not something I have a good grip on and I don’t really know how I’m going to go about learning to control it but I vow to try my hardest to learn coping techniques and ways to understand it better.

This year I want to refine my sleeping habits and develop a healthy routine. I want to sleep better, not necessarily more. I want to go to bed earlier and wake up earlier. I want to create a plan and stick it because I think it will help me be better in both mind and body.

I want acceptance. I want to accept who I am completely and accept my abilities. I don’t want to feel guilt for what I can and cannot do. I want to know that I am deserving and I want to be content. I have an awful habit of feeling guilt for things that I am lucky enough to have, when others have less, and of feeling guilt for not being able to do more, when I feel like I should be doing more. I am enough.

I want to stop being so wasteful. I want to use up the products I already have, wear the clothes already hanging in my closet, eat the food in the fridge and just shop less and spend less money. I have so much already. I don’t need more. Maybe this will be the year of actually completing a no-buy! I want to spend my money of experiences rather than things.

I want to write about my day to day in more detail in my planner. I use my planner to remember things so I want to use it more like a diary than a place where I can list the things I did. I want to talk about feelings and experiences in so much more descriptive language so I can truly remember each little things.

I want to spend more time outdoors and less time on the computer. This one is simple so we’ll leave it at that.

I hope to love more, laugh more, create more, and just live more in this upcoming year of my life and throughout the rest of my time, as well. I control my situation and my life and I want to have some fun and make some happy memories. Here’s to 30 and what this year will bring my way!

My 30th Birthday

I was 22 when I got sick and turning 30 seemed like something that was so far away and also unattainable, but here I am! I made it! I am now officially 30! Well, 30 years and 4 days to precise.

I can’t even begin to describe how wonderful my birthday was! It was the best day! My Mom took the day off of work so all of us were home and together, which was special in and of itself, and my wonderful family spent the day spoiling me. I mean absolutely spoiling me!

Everything was totally perfect. The decorations, which were all about cats/mixed metals/my favorite colors, the food and the beyond thoughtful gifts were all so perfect. I didn’t get sad this year like I have in the past, which I’ve talking about in previous birthday posts, and had a really awesome day.

I did end up crying at one point, however, because I was so overwhelmed with how generous my parents were. They always are with gifts but this year they went above and beyond anything I could have ever expected. They went nuts, but I’m so grateful. I said it above but I mean it, they really spoiled me! They got me a beautiful new kayak, in addition to gorgeous pieces of jewelry and beauty products and books and so much fun stuff, that I can’t wait to be able to use once it gets warmer.

As you might remember we took up kayaking last year and I was having trouble with mine so this is a really great upgrade!

Here are a few pictures from the day but I'm a weirdo and even though I blog about my life I typically like to keep birthdays and Christmas to myself because they’re such personal and special days. Anyway, this was just a little update written mostly as a thank you to my wonderful and incredible parents. And thank you to all of you who wished me a happy birthday! I appreciate the birthday wishes and I'm looking forward to the year ahead of me. I'll write a post about what I hope to accomplish in my 30th year soon so I'll see you then!

Age and Gratitude

People react so strangely to aging. There is nothing more natural than getting older with each passing day and so many of us don’t get to do it as long as we would like but there’s still a very bizarre stigma around the aging process and I just don’t understand it.

You always hear those women joking about how they’ve been 21 for the past 8 years or someone refusing to state their age aloud, but why is that? What could possibly be embarrassing about being able to grow older?

When you’re younger time seems to go pretty slowly and each birthday that arrives is such a special and exciting day but sometime between then and now birthdays become something to dread because how in the world could you possibly want to celebrate another year?

I’ve never understood it and maybe that’s because I never thought I would live to be (almost) 30. I was 22 when I got sick and each year since has truly been a gift, something I never thought I would get. With each year that passes I am reminded how lucky I am to still be here. It is an honor to be as old as I am.

When I turn 30 on the 10^th of April I will be full of joy and full of pride. Each silver strand I find atop my head is so beautiful and is such a special reminded of the past 30 years. Each smile line, every fine line and happy little crinkle around my eyes is a happy reminder about the life I’ve led to this point. Each day I’m alive is a blessing. I will always be grateful for whatever age I am.

I’ve had people say things like, “Oh, you’re turning 30? How are you doing? It’s scary to turn 30.” But I don’t feel scared or sad or upset that I’m not longer in my 20s. My 30s are going to be a brand new decade of my life to live and experience as many things as possible. It will be a brand new chapter of my life in which I can make memories and live each day with a heart full of love and optimism. I will get to spend time with the ones I love and be as happy as I possibly can be. Of course, I fully understand that there will be rough days but I know the good times will outweigh the bad, just like the have for the past 30 years, but I’ll hopefully have a decade of love and light to keep close to my heart.

Not everyone gets to age so I will be respectful of each and every second I am given. I promise to try to make the most out of it. I promise to love with every ounce of my being. I promise to smile as often as I possibly can. I promise to always remember how lucky I am. I don’t want to be on my deathbed, whenever that be whether it’s a year from now or 50, looking back and wishing I had lived more. I will do whatever live I am capable of and I will be overjoyed to do so.

I implore you all to respect your time, too. Be proud of whatever age you are now and mindful of all of the time behind and before you. We are so lucky. 

Just a Thought

If you woke up today knowing that it would be the last day you had on this earth would you suddenly be full of panic and regret or would the life you lived have been enough? Okay, you’re probably not going to die today but you will die one day. The people you love will also die. This is a reminder that life is short. Our time is so fleeting.

Did you see enough? Did you do enough? Did you love enough? Did you get loved enough? Was it enough, or was it not enough? It probably isn’t ever really, truly enough but we have to make it be enough so our hearts can be full and we can live out our days as content as possible.

We can’t change the world, nor can we change other people. We can only change ourselves. We only have control over how we feel inside, so we have to make every single day count and make every second be enough. It might not always seem like it but you're in control. You hold the power. You have the ability to make your life what you want it to be.

Make your life enough.

Q+A #1

I recently asked on Facebook if you had wanted to know about me/my illness and I got this:
I'd like to know how have you accepted your condition at such a young age? Do you believe in god? How have you spiritually evolved over the years with your illness? I'd like to know how you feel when your friends get married/babies & you are ill? I'd like to know more about your spiritual journey.

I think what I’m going to say first might sound a little odd but when it comes with accepting being ill, especially when I was so young, I didn’t have a choice. I could have been angry, upset, sad and spent time feeling sorry for myself but I strongly believe that life is exactly what we make it. We choose how we live and how we feel and how we view the world so to me the only way to live is with a positive outlook and a happy heart. That doesn’t mean I don’t feel a little down sometimes because I do but for the most part I understand that I am exactly who I am meant to be and I am exactly where I am meant to be.

I think that getting sick, as hard as it can be sometimes, was one of the best things to ever happen to me. I was given a new outlook on life, one that showed me what life is all about and how I should be living. It gave me the opportunity to know what is most important in life. I focus on the big picture and focus my attention on family, love, light, kindness and joy. Those are the things that matter and getting sick allowed me to see that.

It’s allowed me to have an open heart, one that is compassionate and caring. Not that I wasn’t those things before but getting sick has made me a better person. I see the world and the people around me in a much different way. I’m very grateful for the lessons I have learned. I think I’ll do an entire post about this soon.

Religion isn’t something I would normally talk about but since I was asked about it I will. I am not a religious person, nor have I ever been one. I’m not really sure what I believe in; although, I do believe in something but I don’t necessarily believe in God or the traditional views of heaven and hell. I respect all religious views, however, and I find theology to be very interesting. I know a lot of people who are ill and take comfort in religion, but I’m not one of them.

As for how I feel about my friends getting married and having children, which is a great question! I was never that little girl who dreamed about my wedding and I didn’t grow up being a woman who ever even wanted to get married. I also do not want children, not that I could have any if I ever decided I wanted to. I do not have traditional views when it comes to marriage so when my friends get married or start their families I don’t feel jealous or upset that I’m not able to do that myself. I don’t think it’s fair, in any situation, for us to compare ourselves or the paths we are on to other people or the paths they’ve embarked on. We are who we are and that is good enough. If I was meant to be married or have children that I would be married and have children. You know what I mean? I am where I am meant to be and I’m okay with it. I will admit that when I first got sick I didn’t feel like I measured up to other people my age but all of those worries have floated away and I’m perfectly content with my life.

Sometimes I wish I wasn’t sick, but I am so I’m okay with it.

Anyway, I hope that answered your question! 

New Symptoms

I feel like every single day my illness (or illnesses) is changing. There seems to always be something new and unexpected happening within my body. I know my body at war but I would really appreciate if it could just take a break and let me understand what’s going on for a little while before morphing into something else.

I’ve been experiencing a lot of electrical sensations that are very painful running through my spine. It’s so uncomfortable and the only thing that seems to help at all is lying flat on my back, not moving, and using a heating pad where it hurts the most. If I move at all, though, the electrical pain shoots right through me again.

My foot has also had this weirdly extreme pressure/electricity/fire. I don’t know how to describe it. It hurts.

And my ribs! The left side of my ribs has been feeling as though there is so much pressure being applied front and back. It’s like my rib cage is being crushed in a vice. It makes it hard to stand up (or sit up, for that matter) and to catch my breath. Flattening my body out and not moving also makes this sensation feel a little better but the second I move it comes right back. Maybe I could even describe it as having a corset or Spanx that are way too tight against my ribs and back, although I’ve never worn a corset or Spanx so maybe I can’t freely use that example.

There’s also fire and pins and needles racing through my hands and feet. This is on top of everything else I've talked about in previous posts describing what I'm dealing with. The migraines and intense head pains are still around. I still hurt, a lot. I still get very confused.

I've been keeping track of all of my symptoms better than I have ever before. I use an Erin Condren planner for daily life things and I've been using the Perpetual Calendar that came with it to track my health. I'm thinking it will be easy for a doctor or nurse to read and help them understand what I'm dealing with on a daily basis better.

I’m wishing summer was here again. I felt so good this summer. I felt strong and healthy. Now I’m just feeling discouraged but I have some good news. I’m insured again. I qualified for OHP, since I’m disabled, and I’ve been assigned to the doctor that I wanted to be so that’s awesome. I need to make an appointment and go in soon but I’m scared. I’m scared that they’ll dismiss my symptoms or not believe what I’m saying like doctors have in the past. I feel damaged by my past experiences with my illness and medical professionals.

I know I’ve had some really great doctors who have listened and understood and tried to help me in whatever way they could but I’ve also had some terrible ones and those terrible ones have seemingly scarred me. I don’t want to ever again feel the way that doctor made me feel when I was 22. I've mentioned that in the past but it's something I'd rather forget.

I’m feeling more and more like it might, in fact, be MS but we’ll have to wait and see. Thinking back, though, the medications I was on for Lupus and Fibro did nothing at all so that’s also another sign that it’s not what they originally though. I’ll keep you all updated.

I've also been feeling really sad lately. I don't know if it's the weather causing my gloomy mood or if I'm just feeling a bit down. My anxiety has been hanging around a lot lately, too. I might be a little depressed but I'm still so grateful for my family. That just needs to be said. I love them so much.

One final thing, the other night I was hurting so much and Hunter was on my chest snuggling me and he did the most amazing thing. I kept squeezing his fur when the pain (not hurting him, of course) was coursing through me and every time I did that he would put his paw on my face and hold me. It was the sweetest thing and I Just had to share that with you.