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.

Summer 2016 Recap

Fall is here but I wanted to do an update and tell you all about my summer. I’m so grateful. I mean just beyond thankful, for the summer that I had this year. You all know how rough last year was for my family and this summer was the complete opposite. Everything was perfect and I think I can officially declare that the summer of 2016 was my best one yet!

I’m disabled, my Dad is retired, and my Mom is a teacher so we are lucky enough to get to spend summers at home together. We spent a lot of time in the pool, reading good books, watching fun movies, shopping and playing our favorite board game – Monopoly! We spent a lot of good quality time with each other and also went on a lot of adventures. We also played some mini-golf and went on lots of hikes and walks.

We took a short vacation to our favorite coastal town in Oregon, Newport. We spend 2 days there and it was really nice. We spent a lot of time on the beach and actually ended up sitting on some driftwood and watching California Gray Whales off the shore for a couple of hours. They were feeding but kept breaching and it was so much fun to watch them. We took Cooper, our dog, with us and he really loves being on the beach just like the rest of us. We spent some time shopping on the Newport Bayfront, which was fun, and then explored Ona State Park, which I think is one of my new favorite places in the world. It was a short trip but the majority of it was perfect!

July 17th was an important day of celebration in my household because it makes my Dad’s 1st ReBirthday!

He still has cancer but he’s doing so much better now. We celebrated with gifts and cake, just like we would with any other birthday. It was such a happy milestone for our family to reach.

We started kayaking this summer and we went many times. Kayaking has become one of my all-time favorite hobbies! I really love it. It makes me feel at peace to be on the water and the physical act of paddling makes me feel so strong and healthy. We’ve been to so many beautiful places and been lucky enough to explore them from the water. We were going at least once a week, but often twice, and we loved every minute of it.

We also went camping. I don’t love camping but I do love being outdoors and getting to spend some quality time with those I love. We ended up having fun even though it was pretty cold and there were so many spiders. I mean, I get that there are spiders outside and I’m okay with that but there were more than you can even imagine. Cooper isn’t a huge fan of camping either. He ended up spending most of his time wearing his coat in front of the fire and sitting in his camp chair, LOL! We did have a nice time, though. We took the kayaks because we camped right on Diamond Lake and the water was great. Cooper rides in my Dad’s kayak and one morning he tried to chase some ducks that were on the water and ended up soaked after he jumped in after them. He was so confused and it was adorable. We got a good laugh out of it! He still loves to kayak, though.

If you’re ever in Oregon and want to go kayaking you should definitely check out Spring Creek and Lake of the Woods. They have been my two favorite places we’ve been so far.

Pretty much every single day was full of love, laughter and time spent together as a family. It was perfect! Except for the last two weeks of summer when I got West Nile Fever. It took me quite a long time to recover but I'm back to normal now.

I'm sorry this post is a bit late but I had a hard time picking out which pictures to share. We took so many! Anyway, how was your summer? I hope your fall is off to a wonderful start!

Good Reminder

29

I’ve said this before but there have been so many nights where I have been in bed thinking that I wouldn’t wake up in the morning. Whether it was because I knew something was wrong within my body or because the pain was so extreme I knew I couldn’t handle it for much longer or whatever other reason; I was so scared that I would die, and that would be the end. But I haven’t died, yet, and I’m still here. Tomorrow I turn 29 and I’m so grateful for another year.

Every birthday that comes and goes is another chance for me to live and be thankful for the time that I have been given. I don’t think saying how grateful I am can even begin to translate how I really feel. I am thankful more than words can describe. I have a wonderful life and an amazing family. Yes, I’m sick but I’m alive and I’m here and I’m able to take in the world and all that it encompasses. Every single day is a gift, and it is one that I am beyond honored to receive.

So, here’s to making the most out of my 29th year and remembering how lucky I am to be here.

Physical Limitations and (not) Conquering the World

Writing posts for this blog has become increasingly more difficult with time. There comes a point when being ill stops being something you need to talk out and vent about and it just becomes your new normal. It’s just a (very big) part of who and what I am and I can’t do anything but accept it and go on with my life making the appropriate changes.

However, I’ve been kind of bummed out about my physical limitations lately so I thought I would sit down and put my thoughts down on (digital) paper.

My Dad is remodeling our living room. He ripped out the carpet and put in beautiful hardwood floors. I’ve tried to help where I can but I quickly discovered that there’s not much that I can do physically. I volunteered to pull all of the nails and staples out of the stairs that were left behind form the carpet the other day and I managed to get a lot of them but I burst into tears afterwards. Sitting at our kitchen table, having a glass of water on a break led me to have a bit breakdown. I was in so much pain and it hit me all over again how unfair this all is. I never thought that life was going to be fair but I’m only 28. I’m young, right?

I should be able to do anything and everything. I should be able to conquer the world but I can’t. I understand that I can’t but my understanding doesn’t change the fact that it sucks.

I don’t want my Dad to know how useless and incapable of doing things I am but he doesn’t read my blog (either of them, actually) so I feel like it’s okay to put this out there. By the way, he loves me and he wants to protect me and keep me safe and he doesn’t know that asking me to do things often means asking me to do things that are out of my range of ability so it’s not his fault. I asked if there was anything I could do to help him this afternoon and he set me up with a piece of sand paper and some paint. He asked me to sand the window frame he just patched up and paint it so I did but my hand locked up and I kept having tremors and I was terrified I was going to spill the white paint on the new floors. I didn’t say a word, and Mom I know you’re reading and I don’t want you to either. I will always volunteer because I want to help. I need to help.

I just wish I could do more. I mean, my Dad has cancer and arthritis and a million things wrong with him and he is physically capable of doing more than I could ever even imagine doing in my entire lifetime so I want to help him as much as I can even if it’s with things that I cannot do.

I don’t think I’ve mentioned this to any of you yet but you know how adult coloring books are all the rage? I’ve tried to color and it hurts so much. It hurts so, so much and I can’t do it. Can’t everyone color? Shouldn’t I be able to color? Coloring is easy and basic and even toddlers can do it, but I can’t.

I accept and understand that I am sick and as time goes on I probably will progressively get worse. I get it, I do, but sometimes I’m so angry and so sad and I can’t be at peace with it.

2016 Goals

Happy 2016! I hope you had a very wonderful holiday season. Today I am sharing a list of everything I hope to do in 2016. I don’t really believe in making big new years resolutions and declarations of things that I absolutely must do in the new year because I think they just set us up for failure but I do have some things that I think are achievable that I am hoping to do and I think sharing helps me to stay on track.

In 2016 I would like to:

Write daily in my Gratitude Journal
I received a Gratitude Journal for my birthday and had yet to write it before yesterday. I already in believe in focusing on the positive things but sometimes we all get a little caught up in the bad things that happen so I’m going to take a little time each night to sit down and write out the good things that happened to me in any given day and the things that I am grateful for.

Blog more regularly

I know, I know! I say this every year and I really do try but then my health gets in the way and I find myself unable and unwilling to take the time necessary to take photos and write posts and then get them published. I’m aiming for at least one post a week on Beautiful Basics. This blog is a little trickier because sometimes I just have nothing to write about so maybe once a month?

Stay calm and find ways to control my anxiety

This one needs no explanation. I think I just need to remind myself to take deep breaths and remember that I’m okay.

Shop less, save more, and use up what I have

I’ve been a naughty shopper lately and I need to knock it off. I have everything I could ever want and/or need so I need to use the products I have, wear the clothes already hanging in my closet, and use things up before I buy more. I tend to be an impulse puchaser and I end up regretting my shopping habits.

Wear real clothes more often

I tend to go for comfort over fashion so my daily uniform consists of yoga pants and sweatshirts. I think I need to wear real clothes more often because I think it will help me feel more like a real, functioning human being.

Start stretching or take up yoga 

I need to move more and exercise tends to make me feel worse so maybe some gentle stretching or yoga will be a good routine for me to take up.

Be more gentle with myself and others 

Being gentle with all living beings is important for our overall well being and something I forget to be kind to myself or I get frustrated with those around me. Life is too short to be anything but good and loving.

Push myself out of my comfort zone and try new things 

I need to get out more and my anxiety often keeps me in the same routine as always.

Read more 

I love to read and unfortunately when I’m feeling unwell I often lose the ability to see and other times I’m unable to comprehend what I read so I get frustrated and just push all my books to the side. Reading is something I really enjoy and I need to do it more this year.

Spend more time outside 

The world is beautiful. I want to see more of it.

Spend less time on Facebook

I spend a lot of time on Facebook and it’s really a waste of time. Checking it occasionally is okay but I think I might be weirdly addicted to it and it does nothing for me.

Regulate my sleep

I don’t keep very normal hours and I would like to wake up earlier and go to sleep earlier.

Eat more regularly throughout the day to keep my blood sugar normal 

I’m hypoglycemic so I have major issues with my blood sugar levels. Eating more often is the key to keeping them regular, which helps my mood and the way I feel. Simply remembering to eat breakfast and having an extra snack or two throughout the day makes a huge difference.

Leave me a comment and let me know what you’re hoping to do in 2016 or if you have any suggestions for me.

Merry Christmas!

Merry Christmas and Happy Holidays from my family to yours. 

Wishing you health, happiness, love and laughter. 

See you all in 2016.

So Thankful

Not all of you are located in the US but to those of you who are I hope you have a very Happy Thanksgiving! If you’re not in the US I hope you have a fantastic Thursday!

I don’t necessarily believe I need a specific day to be thankful because I believe in expressing my gratitude on a daily basis. I am an extremely thankful person and I make sure people know how much I appreciate them and the things that they do. Gratitude and thankfulness equate to happiness in my mind. However, Thanksgiving is a fun holiday and a nice excuse to spend more time with family. My Mom, who is a teacher, gets the whole week off and it’s so wonderful with all 3 of us being home together.

This year has been a bit rocky, to put it mildly, but I’m so thankful for the way it all turned out.

I just realized I never posted the good news – My Dad is in remission! Multiple Myeloma never truly goes away but right now he is as cancer free as he is going to get and I’m so happy. We all are. I cried tears of joy when I heard the news and I’m so excited for what comes next in our lives. It was difficult to be separated this summer with him in the hospital in Portland and my Mom there to take care of him. We are looking forward to being able to go on a vacation soon!

I am, obviously, very grateful for science and modern medicine. Without it my Dad probably wouldn’t be here to celebrate the holidays with us this year so I’m so thankful he was able to receive treatment and get such good care from his team of doctors.

I am also grateful for the help that our friends and family gave us when we needed it the most. We had to set up a GoFundMe account and the outpouring of love and support was truly overwhelming in the most wonderful way possible. We never expected the kind of help we received but we couldn’t have made it without it. Thank you to everyone who helped us. We are forever thankful.

In general I am thankful for my parents because they are the most wonderful, kind-hearted, loving and caring people in the entire world. They are my best friends. They are my people and I love them more than words can say.

I am thankful for Cooper who always knows what to do whether it’s giving me a kiss when I’m feeling sad or barking to let my parents know that I’m having a seizure or snuggling in to me when it’s cold out. He is the most wonderful dog a girl, or anyone, could ever ask for.

I am also thankful for this little boy who came in to my life when I needed him the most. I thought my heart would never stop hurting after Parker went missing and while I still miss him so much Hunter has helped me in ways I never imaged he could. He has brought me so much joy, happiness, and love. I adore him so much and I know he adores me as well. He makes me laugh every single day and laughing is the best medicine. He is the world’s best cuddler and I’m so thankful to have him in my life.

I am also thankful for my blogs. I would be so lost without them. They gave me something to do when I felt like I wasn’t capable of doing anything. They have grown so much and I am thankful for each person who reads one, or both, of my blogs and interacts with me.

My heart is full and overflowing with love and I am so thankful for this life I live. 

Beautiful Basics Beauty Tips for the Unwell

Loving Life Despite the Pain...

I love my life. I live a very happy life and I’m so lucky to have such a wonderful family. I’m really happy but when I sit down to write updates for this blog I can only think of negative things to write about involving my health. I always want to be real with you all and that means sharing the details of my pain but I don’t want any of you to think for one second that I’m miserable or depressed.

Yes, sometimes I get a little down and wind up feeling sorry for myself (don’t we all, sick or not?) but I try my hardest to keep a cheerful and positive frame of mind even when the pain has knocked me on my ass. Every time I sit down to write though I feel myself complaining through my text and that’s not what I want to do.

The pain has just been so extreme lately. My head hurts so much, all of the time, and the spikes are almost unbearable. I’m so lucky to have such amazing parents who understand and do whatever they can to help me. It still hurts though. My bones feel like the break, randomly throughout the day, or they feel like they’re being crushed under a tremendous and forceful weight.

I’m also currently in a mood where nothing tastes good so I don’t want to eat anything. And, as always, I’m so exhausted and no amount of rest seems to do anything to alleviate how tired I feel inside and out.

Despite the pain, I’m still in a good place. My family and I have been spending so much time together and I’ve enjoyed every minute of it. We went on a day trip on Sunday and had the best time. Hunter and Cooper are the perfect cuddle buddies and there’s a lot of great TV to watch. Life is good. I’m also super excited Christmas is coming up so quickly. I’ve been having a lot of fun shopping online. I actually started a few weeks ago. I love seeing what kind of deals I can get on things for my family.

And I moved and remodeled both of my blogs! I’m really happy with Beautiful Basics actually but not with the way this one turned out so I’m going to keep working on it when I feel well enough to do so. It came out so bland looking. What do you think?

In a side note, I really need to find a new doctor.

Okay, that’s about it. How are you doing? Do you have anything you want to share or any questions you have for me? Also, let me know what shows or movies you’re currently loving since I’m always looking for new things to watch and would love your recommendations.

Update

I’m not going to apologize for being absent from BYDLS for so long because I’ve apologized too many times before. It’s just been a really strange few months and this is always the first thing to fall to the wayside. I figured its time for a little life update, though, so let’s get started.

My family was gone for almost 2 months this summer because my Dad had his Bone Marrow Transplant. The poor guy was in the hospital for almost a month and it definitely wasn’t the easy thing any of us have ever been through. He was not doing well for a while there but he’s on the mend now and each day he gets a little better and a bit stronger. He has a great attitude and outlook and is remaining optimistic and is extremely active.! He lost all of his hair, of course, and it has started growing back. Each night it seems to double when he sleeps and then he wakes up with more hair than he had the day before. He just reached a huge milestone, Day +100, and he just had another Bone Marrow Biopsy. We should get the results in a week or two but his blood counts are on the rise and are almost normal. I’m so thankful for how well he is doing.

 My poor Mom, who is a high school teacher, forfeited her summer to take care of my Dad (which she’s not complaining about at all) and is now back in school helping to shape the young minds of our community. I really wish we could send her on some amazing relaxation retreat so she can recharge a little but Thanksgiving break isn’t that far away and she’ll be able to have some time off in no time. Again, she hasn’t complained but my Dad and I feel so sad for her. She's been working so hard and then she comes home and takes care of us.

Cooper, our pup, had a really rough summer as well. He loves and adores me but he experienced some major separation anxiety without the whole family here. He’s doing better now and is just happy that we’re all together.

Hunter is a cat, so he’s always content.

As for me, I’m okay. I’ve been having a really hard time with my head lately and the migraines have been out of control. I've had a few days where I thought "this is it". That sounds so dramatic, but it's the truth.

My nose bleeds have also started again. I’ve been getting bloody noses since I was 11 or 12 and everyone always told me I would grow out of them but I’m 28 now and I haven’t grown out of them yet.

I actually wrote this a couple of months ago and I’m not sure why I never posted it. I’ll post a more recent and detailed update next week.

Do you like the new page? Leave me a comment and let me know what you think. Also, let me know how you’re doing! I’d love to catch up!

A Different Kind of Summer

I have a lot going on in my life right now and I thought now would be the perfect time to update you all.

I think I mentioned this on my Facebook page but if you missed it: My dad has cancer. He actually has Multiple Myeloma, the same type of cancer that Tom Brokaw has. It's a fairly rare type of blood cancer. He's been undergoing chemo treatments for the past 5 months but we are now moving on the next step – a bone marrow transplant!

Just so you know, Multiple Myeloma never goes away. He will never be cured but he can go into remission. The transplant helps patients be healthy for an average of 5-8 years before the Multiple Myeloma returns and treatments have to begin again.

We live in a very small town in Southern Oregon. His oncologist who has been treating him is in Eugene, which is about 3 ½ hours away. We've been going up once a month since December. The transplant, however, will take place in Portland. Portland is 5 hours away. My Dad will have to remain in the hospital for about 3 weeks and then will have to stay within 20 minutes of OHSU (Oregon Health and Science University) for 30-45 days afterwards. In that time he will need a round the clock caregiver in the form of my Mom. Luckily my Mom is a teacher and has the summer off.

My parents will be leaving me, our pets, and our home for this journey on the 6th of July. We are more than ready for this to happen but it's still quite stressful and requires a lot of planning. They will be staying in an extended stay hotel for the duration of their time again. Thankfully we have great insurance and wonderful friends and family members who donated to our GoFundMe account to help us with expenses.

I'm so excited for this next step because it means my Dad is on the road to recovery. Cancer truly effects everyone involved and not just the person with the diagnosis. It's been a rough year but I'm hoping the second half of 2015 will be incredible. It will be a long road to being fully recovered though. It will take a full year for his immune system to be built back up. I'm sure it will be difficult for all of us. He won't be able to spend time outdoors or do many of the things that he loves. In fact, he can't even be very affectionate with our pets. I was planning on taking them back and forth while he was recovering because animals are healing but he can't be in contact with them for a while.

We usually go to the coast a couple of times over the summer but, of course, this year is going to be a bit different. I'm bummed to have to be separated from the two people I love the most in this world. I'm also a bit nervous that I'll have to take care of myself. Sometimes when I'm having a terrible attack I'm unable to do so but I know I have to be strong for my parents, and especially for my Mom who will have enough to worry about with my Dad.

I apologize in advance if I don't post very much this summer on this blog. I'll try to get new content up when I can but I can't make any promises.

Missing Out

I keep trying to picture what my life would have been life had I never gotten sick. I'm having a hard time imagining who I would be, what I would be doing, and what I would expect out of life.

I got sick at a time when everyone else my age was figuring out what they wanted to do with the rest of their lives. They got to look toward the future while still being able to try different things. They got to meet new people, try new things, fall in love, and be young with years ahead of them to get serious and figure it all out. Some were continuing their education while others were finding the career path they wanted to take and others were starting families.

Getting sick changed all of that for me. Instead of getting to be free and in my early twenties I had to put everything to the side and learn how to live while being ill. I can't lie and say that I don't feel like I missed out on a lot but I do feel like I made up for it in other ways.

If I magically got better, I wouldn't even know how to start living a "normal" life. What skills do I have? What do you put on a resume after being ill and unable to work for 6 years? What skills have I developed in that time? I guess I could put things like:
· Able to show extreme patience while waiting in doctor's offices for appointments
· Has good veins and is able to have blood drawn quickly and easily
· Has learned how to push through pain and only take painkillers when pain is beyond unbearable
· Excellent at binge watching television shows when too weak to do much of anything else

So there we go, even if I was well enough to work, what would I do? It's a scary thought, although it's obviously not one that I need to worry about now. I'm just too sick to work and at the rate my illness is progressing I can't see myself ever entering the work force again.

There's so much more to it than just not having a career or a specific path that I want to take. It's also about who I could have been and all of the things normal twenty-something's are supposed to do. What about all the boys I didn't get to date? The friends I didn't get to make? I can't go back but I also don't know how to do those things now. Did I just completely miss out of my twenties because I'm sick? What are my thirties going to be like without getting to experience all of that?

Loss of Control

My body isn't working like it should, and it's scary. I guess my body hasn't worked properly since I first got sick 6 years ago but it's getting worse. I'm losing control over my muscles and it's upsetting. I'm angry about it. I'm also sad.

I'm getting weaker with each passing day and the control I have over my body is becoming more and more erratic. I try to do things and find that I can't. I have to work really hard to make specific motions. I've nearly lost my ability to text on my iPhone and typing on my keyboard is becoming increasingly difficult. My fingers and my brain aren't connecting in a way that makes it so I can do what I should be able to do.

I have so many spasms that I'm afraid to handle delicate things made of glass or anything fragile. I throw things when I'm trying to move them or I drop them and lose my grip when I'm simply trying to hold something. I tried to pick up a glass yesterday and I couldn't open my hand and hold it. Today I tried to rip off a piece of foil to cover something with and I was unable to tear it. Instead the entire roll fell out of the box and unraveled on the floor. A couple of days ago I tried to put some leftovers in a bowl and I ended up throwing the bowl on the counter and then I couldn't pick it back up so my Mom had to do it.

Walking is becoming more difficult. I have to focus really hard on where and how I want to move. I have to move slowly in order to get where I want to go. Going up and down stairs actually hurts, which is an awful thing to experience when you live in a 3-story house. Today I missed a stair and ended up on the bottom but couldn't pick up my feet so I just kept kicking the ground.

My brain is able to understand how abnormal it is and what needs to be done to correct the movements but my body can't. I'm having a hard time comprehending my loss of coordinated muscle movements. I'm in my late twenties and I should be able to do these simple things.

What's really going on?

You all might probably know, if you're reading this blog, that I was diagnosed with Lupus and Fibromyalgia. I'm not entirely convinced that this diagnosis is accurate. Lupus is an illness that has remissions and flares. I have not once even been in remission in the 6 years that I have been sick.

While I do think Fibro is a correct part of my illness I think my symptoms like up more with Multiple Sclerosis, or MS. In the beginning every single medical professional thought that it sounded and looked like I had MS but my MRIs all came back showing no lesions on my brain. I wonder if I were to get another MRI now, 6 years later, if the lesions would show up.

I'm only getting worse and it really makes me wonder what is actually going on inside of my body and brain. Maybe I have all 3. Who knows?

If you're sick, like me, do you feel like you have the right diagnosis?

A Loss of Control and OCD

I originally had a post scheduled to go live today about the clothes that I wear that are comfortable even during my most painful days. Believe it or not, clothing is especially tricky when you're ill and in pain. That post will still go up, maybe next week, but an issue came up that I think is more pressing.

As I have lost control of my body and of my health I have developed OCD. I want to say, quickly, that I truly believe humans are creatures of habit and ritual and that all of us have OCD to a certain extent, however small or large. My OCD is growing increasingly more pronounced as my health becomes increasingly worse.

It makes sense, when you really think about it. A loss of control is really hard to deal with, in any sense, and so trying to make up for it in any other area is a totally normal and understandable response. The fact that it's normal doesn't make it any less embarrassing.

I can't stand germs. I can't stand being dirty. If someone is smoking near me (side note: eww) I need to come home and shower right away. If someone is hacking and coughing near me I need to come home and shower right away. I need to wash my clothes right away. I don't like the idea of touching things that many strangers before me have touched. It's not every single time, but it's enough to be something I need to work on.

Maybe we can chalk that up to being immune compromised. I can get sick very easily so maybe I just don't want any chance of catching something. That would be a good idea, except…

I can't go to bed without washing my face, feet, and hands. I can't stand the thought of bringing the dirty world and all of its germs into my bed at night. I have to wear fresh clothing to make sure everything is clean.

Sometimes I shower, go out, and then have to come home and shower again. This isn't every time but it's enough that I feel ashamed. Yesterday, for example, I went to the grocery store with my Mom after I showered and I had to come home and shower again. I had shampoo drip all over me and the smell was bothering me and people were coughing all over the store. My Mom knew I was showering again but I was so embarrassed about my Dad finding out that I got dressed quickly and blow-dried my hair so he couldn't tell.

I even feel embarrassed telling you all this, but there's a reason. I think it's okay to feel like you have lost something when you become ill and it's okay to try to make up for it in other ways. Have any of you felt like you've lost control being sick? Or dealt with OCD?

Ice Ice Baby

I think one of my scariest symptoms is when I'm struck in the head. The pain is always so immense and unbearable. I usually lose the ability to speak properly and I get really confused and upset. I also get migraines but these 'lightning bolts" are something else entirely. It's so hard to describe them to people, doctors or otherwise. Sometimes it's like getting struck with a lightning bolt or having a knife being forced into my brain or the other night I had to ask my parents what the grim reaper carries with him because that's what it felt like. By the way, it's called a scythe or a sickle. I swear I could even feel the curve in my head.

We made a discovery a couple of weeks ago, well my Dad actually did, and when this happens my neck and head are usually on fire. I develop a crazy fever so my Dad decided to try icing my neck in order to cool me down. It helps so much! I don't understand why my blood boils and my brain starts to fry but cooling my body down is one of the only things that truly helps. It helps me regain my ability to speak, tones down the pain dramatically, and eases my confusion. This might be why hanging out in my pool in the summer has a tendency to make me feel better.

Have any of you experienced anything like this?

I have a collection of ice packs and wraps but I'm planning on buying one of these Ice Kaps soon. It's a bit pricey and I'll look pretty silly wearing one but I'm okay with that and will do anything to find some relief. I love that it has a place to put a pony tail through!

All is NOT Fair in Love & Illness

Let's talk about dating and relationships. This post is something I debated on writing about because I don't think it applies to everyone but it does to me. So please keep in mind that I'm only talking about my personal opinion about life as it pertains to me and no one else.

I don't date. I don't have relationships. I don't even flirt.

The last time I had a boyfriend or any type of romantic relationship was when I was 21 and I don't plan on changing that any time soon. Part of the reason is the fact that I have much higher standards than I did when I was younger and haven't met anyone who has made me want to change my relationship status but the biggest factor is that I don't believe that it's fair for me to date.

When you're ill it's hard to commit, period, to anyone or anything. I never know how I'm going to feel so I can never make plans. I am also progressively getting worse so I don't think it's right for me to form any bonds and make someone else become part of my world. I'm in pain all of the time. I can't always control my body and/or my brain. I lose the ability to speak and/or walk. I have panic attacks and anxiety that keep me home. I have such extreme headaches that I cry for hours. I'm so exhausted most of the time that I'm not capable of doing the things that I wish I could be doing. All of these things combine to equal a situation that I have learned to accept, and that my parents have accepted, but it's not something that would be fair for someone else to have to deal with.

My Mom was speaking to one of her friends about this theory that I have about not dating and the friend said, "tell her to watch Sweet November and A Walk to Remember". I like both movies and I get the point that it's better to have love even if it's not the normal, traditional kind of love but I just can't stand the idea that I could be holding someone back from experiencing life. I feel bad enough for my family, who love me through sickness and in health.

I just realized this sounds kind of like a cry for attention but I promise I'm okay with my decision to not date. I don't feel like I'm missing out on anything because my life now is different than the life of someone with no illness.

As for flirting, I've never been capable. My family and friends always point out guys who check me out and I just don't get it. I never see people looking at me and when I do catch someone staring at me I always assume that it's because I have food all over my face or something. LOL! I simply don't understand any of it.

I have the only men I need in my life – my Dad, my dog Cooper, and my cat Hunter.

Different does not mean better or worse. It simply means different.

Someone once asked me how I stay so cheerful and positive while living with illness and the answer is really simple, life is good. Despite all of the crazy ups and downs that accompany being sick, I am happy because my life is wonderful and as long as I'm breathing I will continue to be happy.

Of course I get sad and feel down sometimes but I'm an extremely firm believer that life is what you choose to make it. I can be miserable and unhappy and feel sorry for myself but why? Life is short and I want to be happy every second that I possibly can.

I am not the person I thought I would be and my life might not be what I imagined it but that doesn't mean it's bad. I am in a totally different place than I could have ever dreamed of when I was a kid but different doesn't mean better or worse. It simply means different and once you realize that it's all about how you decide to feel about life as a whole. Enjoy the detours in life. You are who you are, so embrace it and love yourself and love your life because you don't get to do any of it over.

I like who I am even though I'm not the world famous news anchor that I had dreamed of becoming. I like who I am even though I'm not perfectly healthy. I like who I am even though I live with my (wonderful) parents instead of owning my personally designed dream home. Dreams are nice but plans change and it's okay to be happy with the version of you that is currently real instead of the version of you that you dreamed of becoming.

Whether you're ill or not it's important to remember that it's okay to love yourself and accept who you are right now. You are perfect as you are.

And if all else fails simply remember my motto:
Different does not mean better or worse. It simply means different.

Greater Understanding

My 28th birthday is in 11 days and I'm so glad to be celebrating another year of life. I think most people only get better with age and I'm one of them. I love my fine lines and the gray hairs I find atop my head (I actually have quite a lot but they are so white they look blonde). I'm grateful to be turning another year older, because not everyone gets to.

I can't tell you how many times I have gone to bed, since I first got sick at 22, thinking I wouldn't make it to the morning because of the amount of pain my body and mind were experiencing. I was either in so much pain I couldn't imagine how I could possibly make it through and live to see another day or I felt like something was so wrong inside of my body that it was my time, the end of the line. Even though those moments are really terrifying they are also eye-opening. There are lows in life but there are many more highs and reaching those rock bottoms lead you up to new places you didn't expect. Each of those bad moments have led me to a place of enlightenment and while I still don't know the answers to the biggest mysteries of the universe I do feel like I'm smarter than the average bear, and for that I am thankful.

Sometimes I think back to my pre-sick days and I just didn't have the outlook on my life that I do now. I feel like I understand life and what it is all about a lot better than someone who has never been ill. Nothing makes you realize what really matters in life more than getting sick and all of the ups and downs that go with it.

I appreciate the little things as well as the big ones. I deeply and profoundly appreciate when I'm having a good day and I feel almost physically and/or mentally normal, but I'm also okay with the bad days because even though not every day is good, there is always good in every day. I am thankful for my family – human and furry, how much healthier (minus the cancer) my Dad is since he received his heart valve replacement, the way my Mom lights up when she talks about her students and how much she loves teaching, the two furry little guys who make my every day a little brighter, each breath I am lucky enough to take, every new thing I learn, the nature around me that I get to look at and enjoy, sitting on the patio enjoying the sunshine with Cooper at my feet and feeling the warmth on my face, the laughter of my loved ones, the snores of my little furry ones while they sleep, getting a letter/card/package in the mail, inside jokes, laughing so hard it hurts, fresh flowers (until they die, and then I get a little bummed), receiving a thoughtful post on my Facebook wall or a friendly e-mail… Some of those are slightly random and that's just a small sampling of things that make my life beautiful but the point of the matter is that I am so grateful for all of the things, regardless of how big or small they may be, that I get to experience in my life. Life is what you make of it.

Some people tend to get lost in thinking that some things matter in life when the truth is they don't. Things don't matter. The car you drive or the designer bag you carry, they don't matter. What other people think about you doesn't matter. People who don't love you or like you don't matter. All that matters is living life, loving the ones you want and need around you, and how you think and feel about yourself. I'm not saying that I'm an expert on life or what the meaning of life is but I think I've got a pretty good handle on it.

I really wish that everyone could truly understand the world, the way I do, without having to get sick. I'm so happy that I am able to see the world in such a special and unique way.

I'm thankful to be alive and I really couldn't ask for more.