Being positive and looking on the bright side has not always been my strong suit, and this whole sickness crap, has really put my positivity capabilities to the test. What I go through everyday really just sucks. Recently someone told me to " Just be positive and life would be so much better." She then went on to say other things about having a positive attitude, that basically belittled the seriousness of my situation. I do agree, being positive is a powerful tool and something I really have to work on because when you wake up and go to bed in pain, it is hard to look on the bright side. For awhile, the harmless words of this individual bothered me and I couldn't figure out why.
But it dawned on me, that most people have dealt with minor illnesses or health issues, got better, and that's all they know. To them, illness ends. Maybe they had strep throat, friends brought ice cream, they took antibiotics and missed a week of school. Looking back on it, they might have thought it wasn't bad at all...however, if you talked to them DURING, its a whole different story, they are most likely miserable. So right now, I am stuck in the DURING, and I am doing the best I can. The difference between me and the 'above' is I've been sick for 5 years, so the "novelty" wears off and people automatically conclude that I'm use to living like this..So things are tough. I think its safe to say we've established that.
However, I do want to point out that I am working on my positivity skills, I really truly am. Its like I'm going the opposite direction on an escalator. It's not easy. There is this resistance that is a continual uphill battle. Some days are easier than others. Some aren't. It all depends. It depends on how severe my pain is that day. Or maybe I've contracted an infection which might knock my progress a few stairs back. Maybe my medications worked how they were supposed to. Maybe they didn't. It all just depends.
Pain. Energy. Family. Medication. Doctors. Friends. Appointments.
My positive-progress is continually being changed due to the craziness of my situation. Some days I feel like I've been knocked off the "escalator" completely and the reality of ever getting to the top seems like an impossible feat, but nonetheless, I'm trying, and with the help of my family, I mange to pick myself back up every time.
For the last 5 years I have been quite the negative nancy about September 23, my birthday. Each year, when my parents so kindly ask what I want, only one thing comes to mind. To be healthy again. And of course, that won't change, but it is extremely selfish of me because I know they would give it to me if hey could. It seems as if every year I end up dreading it more and more. I couldn't help but point out all the wonderful things that I missed out on, the 'mile stones' that never happened because I was recovering from surgeries, in too much pain, or something else along those lines. Each year comes and goes and I seem to become more bitter and ungrateful. I'm missing the entire point of things, because I'm too wrapped up in the social expectations of life, and hurting the people I love while I'm at it. In perspective, it all seems quite silly to be so worried about "missing out". I've been so frustrated that I haven't be able to follow the socially acceptable timeline of growing, that I've neglected to cherish and value the unique layout of time I've been given.
Just like every other year, for the majority of 2013, I was dreading my birthday. In fact, I was dreading this one even more so than ANY of the others. I've been dreading my 21st birthday more than anything. I was SO hung up on the can'ts and haven'ts. I'll be 21 and haven't moved out of my parents house. I'll be 21 and some days can't get out of bed. I'll be 21 and haven't started my career. I'll be 21 and can't shower on my own sometimes. I'll be 21 and haven't dated outside of high school. I'll be 21 and can't go a day without pills. I'll be 21 and haven't driven for over a year. I'll be 21 and can't remember when I last hung out with friends. I'll be 21 and haven't started any of my goals or dreams.
Can'ts. Couldn't. Haven'ts. Won'ts.
I'm ashamed for thinking like that. So, as you can see, I was really dreading my birthday a lot this year. But, in mid July I decided no more. Birthdays are to celebrate your birth. I should be grateful to be alive (despite the illnesses and difficulties) because no everyone gets that luxury.
I will be 21 and get the opportunity to still live at home. I get to watch family feud and Jeopardy with my family in the evenings. I get to talk to them and discuss how their day went. I get to live in a warm house filled with the aroma of my moms home cooking. I get to play continuous games of pinochle until late at night. I get to form a bond and relationship with my family members that not many people have. I get to go to Target on my only "outings" with my mom and have more fun than you could ever imagine at a grocery store. I get to be greeted by our 3 dogs who never fail to make me feel like the most important person on the planet. I get to be completely financially supported by my loving parents who work extremely hard to help me in every way possible without blinking an eye. I get to have random movie marathons with my siblings. I get to live by neighbors who are basically my adopted Utah grandparents. I get support in the decisions I make. I get to meet amazing people with similar problems that I would have never known had I not been sick. I get to live with my best friends.
I get to live a life, so unique and fulfilling, that others can only imagine what its like.
I'm going to be 21 and the luckiest person ever.
Being sick has really opened my eyes, to see what really matters. For the longest time I was SO caught up in everyone else's lives. People were doing amazing things; traveling, starting careers, working, starting families, getting married, college, having fun, and I felt like I was being left in the dust. I still struggle with it sometimes, but I have to remind myself there is no specific set of instructions that you HAVE to follow. My plans may have hit quite the detour, but that doesn't mean they are ruined. In fact this detour may have perfected or changed those plans for the better. This detour that I'm experiencing is one that VERY few people get the opportunity to go through.
So, with my positive mindset in place, I am grateful to be going through something that not many get to experience. I'm thankful that it has changed me for the better and has given me a view and perspective of life that makes me truly grateful for the little things and appreciate what I have. Maybe 21 won't be so bad after all.
So yes, I'm trying to turn myself into a positive Polly. However, pain and NEVER feeling good makes it extremely difficult, but I'm trying. Things are still the same health wise. Actually, no, that's kind of a lie. I feel worse than ever and my health continues to decline, which I didn't think was possible, but apparently it is. The bad days seem abundant and never ceasing (The rains storms have made it so not everyday is a bad day. So thankful for the rain). Each bad day is harder than the last. Lately the bad days have seemed impossible. I keep waiting, hoping, and praying to catch a break, but I haven't...yet. And I feel so alone. Life seems to have a funny way of kicking you while you're down. But oh well.
However, I'm super excited that fall is right around the corner! It is my absolute favorite time of year. Just thinking about it is making my spirits rise. Once fall time arrives, please eat pumpkin flavored everything for me, k? And these rain storms lately? AMAZING! I swear they are the only thing keeping me from having a complete break down. You know how people get depressed in the winter because the sun isn't out as much so they lack vitamin d? Well, I'm the opposite. Dark, stormy skies BOOST my spirits. And, if it rains, it is pretty much impossible for me to have a bad day. I wish it would rain everyday. I think I need to move to Seattle.
Oh, I need some advice/input. For my 17th birthday, we were going to go to Disneyland. Well, I kept getting sicker and when were suppose to go, I ended up having gall bladder surgery. Since then, every year for my birthday, we say " Okay, THIS is the year we will go to Disneyland." But as you can guess, every year, my health has just been declining and the trip keeps getting postponed. But no more. I have to stop waiting to feel better to do things, because I don't' know when that will be or if it will happen. I know its going to be extremely challenging and exhausting, but I absolutely love Disneyland and I am dying to go. Plus is the "Happiest place on Earth" and its "Where dreams come true", so I feel like its the place I need to be! Okay, so this is where I need help. Since we won't be able to just wander around mindlessly due to being in a wheelchair and not feeling good, I want to set up some kind of "game plan" to get the most out of our trip. I know a LOT of Utahans are Disneyland fanatics, so if you know the lay of the 'Land' any tips would be appreciated.
What are the must see attractions?
Good affordable hotels to stay in?
Things/Places at Disneyland that are low key when I'm not feeling well?
Favorite souvenir shop?
Best way to navigate the park?
Best places to eat? (For Mom & Sis)
Best time of year/week days to visit/not crowded?
Awesome things that make your trip memorable?
Any ideas or tips would be really appreciated! Interestingly enough, last time we went to Disneyland/California Adventures, 4 years ago, we were sitting in the Aladdin show, when we got a call from my doctor saying my blood work showed my platelets were alarmingly low and that they had scheduled an appointment for a bone marrow biopsy up at primary children's. Hopefully this trip will be less eventful ( as far as medical issues are concerned.)
Also, September 9-15 is Nation Invisible Chronic Illness Awareness week. Illness has obviously impacted my life in a big way. However, my illnesses, have not always been obvious to the naked eye. Lately, my health has taken quite the toll on my image, and people can tell that 'something isn't right', but other times, if I have the energy to get ready, my illnesses may be completely invisible. Just because I might "Look great!" Does NOT mean I feel great, unfortunately. That's one thing that has been really difficult for me, somehow, somewhere, people have gotten the idea that if you look good/pretty (ie: did your make up) you are a feeling better or are magically cured! That is usually not the case.And sometimes it's almost offensive in a way because it feels a little like this thing, this monstrous, huge thing that consumes my life, that takes every ounce of my strength to fight, isn't that big of a deal. And I know that isn't what people mean when they hand out the "You look so great!" compliment, but a lot of the time, it feels like the severity of my situation is being belittled. In fact I had a funny conversation with a friend a few months ago who said "You look amazing! I'm so glad you are feeling better, found a treatment and are getting back into life." (This was just after I told her how bad things went at the mayo haha.) So yes. Living with an invisible illness (or in my case illnesses) is NOT easy and it can be so frustrating when there aren't obvious outward physical symptoms. To learn more about what its like visit THIS link
Anyways, thank you for reading! I hope you are all doing well and enjoying life.