Emotional Ranting, Memory Lane, And some Advice on the Outlook of Life

In this post, I’m probably not going to be as positive because I’m going through a hard time at the moment, so forgive me if I seem too rash.

I feel sad right now, and I know that it’s acceptable to feel sad considering all that I’m growing through but I don’t want to be sad right now. I want to be happy, upbeat, and hopeful like I’ve been throughout this entire process so far. However, today is a bit different as I’m feeling quite blue.

I’m feeling blue because soon acquaintances I knew from high school are going to be finishing up their first year of college and so are my college friends in September. I feel sad because I was supposed to be finishing my first year along with them. Now, I’m behind and I feel devastated.

I also feel down because before I got really sick my friends from college and I planned to rent a house together for the following year and now I can’t participate in that exciting adventure. I can’t participate in anything anymore and I’m just home ridden 24/7 besides the few exceptions where I go to doctors’ offices or hospitals.

I miss being outside, I miss feeling the hot sun blazing down its rays onto my skin. Even though I’ve always hated the hot sun and California weather, I miss it now that I can’t really feel anything at all when it comes to fresh air and sun. I still hate the hot sun but I rather feel that and be surrounded by outside air rather than inside air.

I missed out on experiencing a full childhood and now I’m missing out on young adulthood as well. I guess you can say I’m just being negative at the moment.

I feel misunderstood and I feel like no one can completely relate to me. It’s not like I wish this upon anyone else because I don’t but it would be nice to have a friend to talk to with similar experiences.

At this moment in time, I’m nervous about the future. I’ve always been the type to look ahead and plan for years to come and now I don’t have that ability. I can’t plan my future right now because I don’t know anything. I don’t know what’s causing my neurological issues and it’s frustrating.

I want an answer. I want to know the name of the disease that is causing all these disruptions within my life. I want to know why it came about, I want to know what’s to come of it, and I want to know how to deal with it.

I feel blindsided. I have no idea what is to come in the future and that scares me. I like having some sort of plan and right now I have no plans whatsoever. I’m just living day by day and I’m not used it or do I enjoy it.

I try to tell myself not to worry but, how can I not? How can I not worry about my future when I’ve been ill and disabled for months with no answer as to why? I can’t help but ponder on what it is that I have but the more I wonder, the more uncertainty it brings.

Doctors keep confusing my family and I as one physician says one thing and another doctor says something else. Who are we supposed to believe when so many different opinions are being thrown our way? How are we supposed to find answers when most physicians take one look at my case, and say that they can’t help me? How am I supposed to keep calm about all of this when I’m suffering every day from this unknown illness?

So many questions unravel within my mind mixed with many emotions. I feel lost, confused, sad, and upset all at the same time. However, I also feel quite confident. I feel confident in the fact that I know god is watching over me and I know that this is part of his plan and that I trust in him. I trust in god greatly and when I think of my situation is that sense, I feel a thousand times better.
 

If I didn’t have god in my life, I would feel extremely lost and I am so grateful that I am aware of the fact that he loves me and is watching over me.

I dislike the fact how I feel like I can’t be sad once in a while or upset because if I voice the fact that I do feel that way, people will automatically think I’m a psych case. NO, that is not the case. I am not a psych case, yes I do have a history with mental illness but that is my past. I know what it feels like when I’m having a mental breakdown and this is not one of them.

It’s normal to feel all these emotions in a situation like this. Who wouldn’t feel this way after all this stuff being thrown at them?

Anyways I apologize for ranting but I just needed to get this off my mind and down onto paper or in this case a word document.

Writing has always been a coping mechanism for me. I love writing because it gives me the chance to express my emotions. Also, when creative writing is involved, I love it even more because it gives me the opportunity to create another world and to focus on that alternate world instead of my own. It gives me the chance to be in charge of what happens in the story. It’s a great feeling to be in charge when writing because I don’t really get the opportunity to be in charge of what happens in my life.

I do get to be in charge in certain situations of my life but not all. So it’s nice to get away and enter whatever world I create with my imagination.

The same goes for reading a book. I love reading because it allows to me to step into another place and put myself in someone else’s perspective of life.

Speaking of reading and writing, in the very beginning of my education I hated both. Due to my being premature I guess my skills in that area developed quite late. When I was in first grade I could not read or write at all and due to that I had to repeat the first grade. At the time, I wasn’t so quite aware of the situation as I thought perhaps maybe other students couldn’t do either as well.

As the new school year came and all my friends from the previous year moved to second grade I stayed behind and made new friends with the incoming first graders. Luckily, I got to stay with the same teacher who I was quite fond of and developed a good relationship with.

As the year progressed, I pushed myself with the help of my mother and teacher to learn how to read and write. I would stay up late into the night and early morning  at times, trying to read and trying to memorize how to spell words.
 

Eventually with hard work I learned both and even though it was embarrassing to watch my friends from the year before move on and have them question why I didn’t join them, I still learned.

I remember as a kid having my cousin who is only a year younger than me learn that I was held back a grade because of my situation and having her laugh at me and say, “But it’s so easy.”

At that time of course it hurt and I felt stupid. I felt like I was a dumb kid and inadequate to complete school.

Now, I don’t blame my cousin for laughing at me because after all, we were kids and I love her.

I also had trouble with school around that time because I would zone out a lot. Teachers would often bring up this issue with my parents and say that they would try speaking to me and I would never respond until I somehow snapped out of it.

I am now aware that perhaps I have absent seizures but that is just a theory of mine. My friends and family members still mention that I tend to do that however, I’m not really always aware of it.

As I grew older, my capability in academics expanded and opened new doors for me. In third grade, I got presented the “Best Writer Award.” At the time, I had no idea I was even remotely good at writing so that came as a bit of a shock.

By fifth grade I was told I was reading and writing at a high school level. In middle school, I began making the honor roll every year.

 Each school year I progressed more and by the time high school came around in my junior year I entered the GATE program or Gifted and Talented Education program and began taking Honors and Advanced Placement classes.

However, it wasn’t all smooth sailing. I had a ton of obstacles along the way from numerous health issues to missing school months at a time because of them and personal issues as well. Teachers would often groan and complain that I missed too much school and didn’t understand why.

As I missed a good amount of school throughout the years, my grades had this roller coaster effect in the sense that they would go from being at the top of the grading scale and then they would quickly go down the grading scale as health and personal issues got in the way.This was very frustrating because I would work so hard to get to the top and then I would crash right back down due to the obstacles that came my way.

The point of the matter is that with hard work, dedication, and belief, you can accomplish what you want if life allows it. If it is meant to happen, it will happen and if it isn’t then it won’t. However, even if it doesn’t work out the way you plan, no worries because something greater is planned for you.

Plans don’t always work out and my life is a perfect example of that but no matter what I need to be confident. I need to be confident in the fact that even though the plans I had for myself didn’t work out, it doesn’t mean that nothing will work out. God has something planned for me, something bigger than what I had planned for myself and I’m still trying to figure out what that plan is.

Even though it is scary at times to be blindsided when it comes to the future I have hope. I have hope because I know everything will eventually fall into place with the grace of god. I know he loves me, and he loves you too. Maybe you don’t believe in him and that’s okay but try to look at life in a different light even when all you have comes crashing down and hold on to something that will make you want to fight.

In my case, god is my something. God is the reason why I continue to fight on. I trust in him and I put my life in his hands. I know he’s got my back.

For all you lovely readers, “Hakuna Matata”- Lion King.

Rheumatoid Arthritis, Asthma, Lung infections etc.

Recently I got a Vectra Da blood test done on request of my wonderful rheumatologist. A Vectra D or as I’ll call it VD, is a way to determine how your disease activity is. VD tends to be the preferred blood test for RA because it measures 12 markers of RA unlike the C-reactive protein (CRP) and Erythrocyte Sedimentation Rate (ESR) test that only measures one marker.

When you have RA it’s important for you to know your RA number. Your RA number determines what level you fall on under level of disease activity. In my case my number is 45 which means my disease level is high. When it is high, symptoms tend to be more severe and a high level can mean an increased risk for future joint damage.

Even though I’ve just now been diagnosed with RA, I’ve always suspected I had it. I began having joint pain at the age of 5 and I remember notifying my family that my joints were in a lot of pain. Back then, I guess my family didn’t think anything of it. As my joint pain continued as I grew older and into my pre-teen years I brought up the pain to my physician at the time and he said that it was just growing pains.

As I heard this, I knew it wasn’t true. When I got into high school my pain worsened and particularly affected my wrist the worst. At this point I seeked help and began seeing a rheumatologist. Knowing that my grandfather had RA, my rheumatologist did an RA blood test to see if I had an RF or rheumatoid factor. It came out to be negative back then.

When my wrist pain became so severe it was hard for me to write in school. I struggled with this because I was in Advanced Placement classes and with AP; there are a lot of notes.

My pain was so severe one day that I decided to go to the nurses office at school to get something to dwell the pain so I could bring myself to write. The nurse when hearing upon the fact that I had wrist pain was very rude. She said that I needed to suck it up and when she said that, she showed me a little cut she had near her arm that was by her wrist and said “Look what I have, this hurts and I still do my work.”

I just nodded my head and went back to class. It made me upset that she compared what she had to what I had. Hers what simply a small cut that would eventually heal and mine was pain that I had endured all my life that was getting worst and had no answer as to why. It also made me upset at the fact that she said “Suck it up.” I do suck it up, I have dealt with health issues all my life and I only might mention about pain when it is very severe. I have a high pain tolerance so when I do mention about pain it’s really bad.

Now that I do have a diagnosis as to what caused the pain, I really wish I could go back to my old high school and tell the nurse, “It turns out the pain was caused by a disease that attacks my joints and tissues, do you have a disease that attacks your body constantly?” I really wish I could do that.

The school nurses at my high school always thought I was faking being sick since I was in there so often. At one point they even asked me, “Do you just not like school?” I then replied “No, I love school, I’m just always sick.” They pursed their lips and said “You know if you keep missing school, you aren’t going to graduate.”

This really made me upset because I didn’t fake being sick, I was sick. I also was going to graduate and even though I was behind on my classwork due to being in and out of school due to illness, I was going to do it. As you can see the nurses at school and I didn’t have the greatest relationship ever.

Living with Rheumatoid Arthritis has been difficult but it’s just part of my life. There are days when I’m constantly in pain and even the slightest movement is dreaded. I feel very fatigued a lot as well. People usually compare being tired by using the word fatigue. Fatigue is a whole other level, it is nothing compared to the word tired. With fatigue, I can’t even move. I don’t have the slightest energy at all and it takes a lot of energy for me to get out of bed in the morning due to that fatigue. I also get a lot of fevers due to RA and so I constantly need to check my temperature.

Asthma. Asthma is something I have been dealing with my entire life. People tend to think that asthma just causes difficulty breathing fixed by an inhaler but that’s not the truth. For me, my asthma is hard to explain but to put it in the best way, it’s like I’m breathing through a Capri Sun straw. I use Capri Sun straw since those straws tend to be very narrow.

For me, Asthma hasn’t just caused difficulty breathing but has caused constant severe lung infections several times throughout the year every year since childhood. I have tried numerous medications but no matter what my Asthma still finds its way to deliver me presents called lung infections.

I constantly get severe bronchitis and pneumonia which usually leaves me having to either being admitted into a hospital or being home ridden for long weeks or months at a time. I also get constant sinus infections, cough, and mucus build up.

As I type this I am currently enduring bronchitis and have been given an injected steroid along with antibiotics, cough suppressants, nebulizer medication, and more steroids.

I have also been checking my peak flow lately and I am in the red zone. Usually Asthma patients will have a peak flow meter and a peak flow meter is used to determine your asthma severity at times. To use a peak flow meter, one must blow as hard as they can into the peak flow to determine what zone they are in. Green zone means you are good and where you need to be, yellow zone means you need to take caution because your asthma is acting up, and red zone is really bad and means that you need to seek medical attention immediately.

Therefore, after taking my peak flow several times and being very low on the red zone area my mother suggested going to the hospital since that is what one should do when in the red zone. However, I was reluctant because I was pretty sure that if I were to go, I would be admitted. Therefore, we went to an urgent care instead.

The doctor there didn’t seem to know much on the peak flow meter but he did give me a breathing treatment and prescribe me multiple medications. It was quite funny because the medical assistant who took my vitals suggested I had the flu and had absolutely no idea what a peak flow meter was and seemed to not know very well what having Asthma entails. She basically implied that Asthma only causes difficulty breathing and not any of the other symptoms. I then had to explain to her what Asthma entailed and what a peak flow meter was, but I don’t think she quite understood.

Now, I’m going to steer towards talking about life and family in general for the rest of this post.

Mom. My mom is honestly the best mom I could ever ask for. She is always there for me and if I didn’t have my mom, my experiences with illness would be so much more difficult. She is my life line, and without a life line you can’t live. She has been extremely supportive through everything and even though at times she gets frustrated and breaks down, I am so glad I have her. I can’t even put into words on how much I admire my mom for being such a strong woman.

Dad. My step dad who I am now going to mention him as Dad is a blessing. Even though he and I argue often, I love him so much and I am eternally grateful for him filling the void I had in my life from not having my biological father. He has shown me what it’s like to have a father and he has been there for me through thick and thin and even though I don’t have part of his DNA, he is my Dad and he is the best dad I could ever ask for.

Grandma. My grandma is my second mom. She helped raised me and she has taken care of me a lot at my worst times. I love her with all my heart and she is the sweetest grandmother in the world. Even though she has six grandkids, she still manages to show all her love to each and every one of us.

Grandpa. My grandfather is the wisest man I know. Whenever I’m in need of really good advice, he is always there. He has a way with words and he can instantly put a smile on your face the second he starts talking. He views his life in such a positive way despite his hardships and his love for god is infinite and he reminds us to be close to god and for that I am grateful.

God. God is my number one. God has saved me so many times when there have been instances where I should have passed away. He constantly looks after me and I love him with my whole heart and soul. He continues to bless me and he is the one I go to when needing help. He is the one who created me and he is the one who loves me no matter what.

Of course there are other people in my life that have affected it greatly but it would take too long to mention all of them and explain just how precious they are. Maybe I’ll talk about them in my later posts.

I know that not everyone is religious and I’m not one of those people who pushes religion onto others. If you make it clear once you’re not into having a relationship with god then I step back and never mention it again. This is not a catholic blog but I do mention god from time to time because he is very important to me.

Whenever I mention to people about my illness(es), they look sad. I don’t understand why, I mean I know why but I don’t feel like it’s something to be sad about. Illness is just something that’s a part of life and even though some endure and others don’t, it doesn’t make it any less of a reality.

I think those that are healthy are aware of illnesses in the world but they’re not aware on the fact that some people who are ill don’t expect a sorry look or an “I feel bad for you.”

We just want to be treated normally because well we are normal. We just have extra obstacles to deal with when it comes to being ill or disabled.  Being ill or disabled doesn’t define us as a person; it’s just an extra component we need to deal with.

“You’re illness does not define you, you’re courage and strength does”-Anonymous.

Being careful, taking risks, and past love experiences

Throughout my whole life I’ve always had to be careful. By being careful, I mean taking precaution on what I do because if I make one mistake, I can become very ill for weeks, months, and/or being sent to the hospital.

For some unknown reason every year since childhood, I have gotten constant chronic lung infections several times throughout a year. When this happens I end up being sick for weeks to months at a time and have to take a lot of medication along with breathing treatments. Since I was a kid I have had a nebulizer machine because when I get infections, I cannot breathe well at all. Even at times when I don’t have an infection, I still have trouble breathing.

Therefore, whenever I feel a cold coming on I NEED to take precaution and start taking medicine quickly because if I don’t it means I’ll end up with a chronic lung infection for quite some time. However, even when I do take medications quickly I still end up getting an infection sometimes.

It’s very annoying how every single year I have several lung infections. It’s not fun having difficulty breathing along with having constant coughing, wheezing, and mucus coming out when you cough. It’s not fun to be coughing so much that your lungs start to hurt.

I’ve always wondered why ever since my childhood I’ve had this problem. Doctors just say because I have asthma but I wonder if asthma causes for each year of your life to get severe lung infections. I’m not sure if asthma is the answer to that but whatever the cause is long story short not being able to breathe properly sucks.

Being careful and taking precautions has also taken affect in other aspects of my life. I take precaution on my heart. Not physically but emotionally. I have had a few boyfriends since the time I first started dating at age fifteen but I’ve always been very protective in trying not to fall so fast. Unfortunately sometimes I did fail and I have gotten my heart broken.

My first boyfriend, we’ll call him D, is an incredible person. He was truly my high school sweetheart. Him and I had this on/off relationship for three years and even though I was in other relationships at times when we weren’t together, till this day no guy that I have dated has ever come close to making me feel the way he made me.

I first saw him on the first day of freshman year since we had English class together and when I saw him I thought, “I would date him but I know it will never happen.” A few weeks passed by and our teacher assigned seating. As I sat in my new seat, I saw D coming towards my direction and I thought, “Is he going to be assigned next to me?”

My thought faltered as the teacher instructed him to sit somewhere else but then after I had gotten over the excitement of him possibly sitting by me, the teacher said he made a mistake and he was actually supposed to sit by me. At this point, I thought it was coincidence. I tried talking to D but he ignored me honestly since he was occupied reading on his Amazon Kindle. I had only said a few words to him and he was ignoring me which I thought was incredibly rude so I dismissed the thought of thinking anything would come of this new arranged seating.

Time passed, and since I’ve always loved English I was constantly getting good grades on assignments and for some reason D began talking to me. Long story short we exchanged numbers, began talking outside of class and then he asked me out on a date.

The actual date went well but after it was horrible. It was night time and hardly anyone was around or near the movie theater where we spent our date and right when we stepped outside, he said “I got to go, bye.” So then he left leaving me at night time in an area where hardly anyone was around after our date.

You might be wondering why I stood around when he did such things well the answer is, he was different. He and I had practically everything in common and we were both academically striven and nerdy.

He and I had this connection where we understood when something was wrong without saying so. He became my best friend and I knew everything about him. I fell in love with his family and him and we really did have something special.

He was the first to say the L word and it took me months to say it back due to protecting my heart. I let him see me through my darkest days and so did he. 

When I was ill and in the hospital, he would visit and was there for me through everything. I honestly couldn’t have done it without him by my side because for so long he was my rock.

One of the sweetest things he ever did for me was on my eighteenth birthday. Throughout our relationship we had this thing where we loved movies so we always went to the theater. Every time we went to a movie I noticed he would slip the ticket in his pocket. Well turns out that since our very first date he kept every single ticket of every movie we saw together.

Therefore, he put a collage of photo copied tickets and honestly it was the best gift. Right when I saw that I began having tears in my eyes. He saved every single ticket since freshman year and at this point we were about to be seniors.

We often talked about our future and we had this one place at a nearby park that was our spot. It was a park with a lake and we spent lots of time there. One day there was this bride and groom who were taking photos after their wedding. At that moment he said, “That’s going to be us one day.”

I truly loved him and even though we had some break ups before and gotten back together, the time when he broke up with me for the last time I knew it was truly the end. He said he didn’t love me that much anymore and broke things off.

It has been over a year since then and I now have a guard up. I had a guard up before but I have an even bigger one now. We have to be careful with not just our health but with our heart and emotions too because getting injured that way can cause damage as well.

I don’t regret my relationship with him because he showed me what it was like to truly love someone. Maybe he didn’t truly love me but I truly loved him. I’m not just a victim here though, there were times where I hurt him as well and he hurt me and vice versa. Even though in the end I got heartbroken, I am so glad he came into my life because if he hadn’t I wouldn’t of experienced truly loving someone wholeheartedly.

Therefore, being careful and taking precautions is a good thing but sometimes it’s okay to take risks. I took a risk in falling in love but I gained something. I took a risk once when I tried playing tag as a kid but gained a moment of fun before I had to stop.

In life we are going to embark on many decisions but no matter what path you take, just trust in your choice that you’ve made and don’t regret anything because your decisions whether good or not led you to experiences that have helped form you into the person you are today.

Live every day to the best of your ability and don’t look back just keep moving forward. As in words of Finding Nemo, “Just keep swimming”.

Thoughts on upcoming birthday and more

 I've always hated my birthday. Ever since I was a kid, I've always been hesitant about it. I've never seen the point in having a party, inviting loved ones, receiving gifts and having to sit in front of an open flame while people crowd around and sing to you. The only part that wasn't bad was cake. In all reality, who can hate cake? 

The only thing I didn't like about cake was the awkward position of having to sit and see everyone staring at you while singing a song. Why can't we skip the candles and song and just eat cake? Actually that's what birthdays should be like. It should be a cake day. Where you just eat cake and that's it. That would be much better in my opinion.

Anyways, my birthday is coming up on the thirteenth of May and I am conflicted. I am conflicted because like I said I've always hated my birthday and I would honestly always try to get my way out of celebrating. I just wanted my birthday to be like any regular day but my family wouldn't let that happen. We would compromise to have a dinner with family at least. 

This year, I don't want to compromise. I don't want to do anything at all because I feel awful. I'm sick, I’m disabled, I’m in pain, and I’m fatigued and honestly I don't have enough spoons for a gathering. If you're wondering why I'm talking about spoons, it's because there's this spoon theory that explains what some who is ill or disabled may go through on a daily basis. The woman who created the spoon theory is brilliant by the way because it is so spot on. 

I considered for a bit yesterday having a barbecue and inviting some friends and family.  I have been trapped at home, doctor's offices, and hospitals for months and I thought I deserved a bit of fun. Now, I’m not sure that's a good idea because I feel like it would be boring and awkward because I can't even do much. I also have attacks often and I don't feel comfortable people staring at me while my body moves uncontrollably. 

Speaking of not liking people staring at me, I went out in public for a bit with my wheelchair for the first time in months. I went to this event known as the tamale festival. It's where people gather to enjoy various tamales and Mexican food from vendors while enjoying live entertainment. 

Being on a wheelchair, I noticed a few people staring but not much so that was fine as I just ignored it. However, later on I began having an attack so my body moved uncontrollably and as this happened numerous people stared. 

I tried not looking at their faces and tried staring at the ground but I could feel their stares. When I did look up for a few seconds, I saw them staring and it made me really uncomfortable. 

My parents and I left shortly after the attack and we ended up being at the festival for about only twenty minutes. On the way home, my mother asked how I felt being in public and I replied good but that it was awkward having people stare at me while I had an attack. 

Both my parents nodded and said they understood but that no matter what people are going to stare and its human nature. I know that people are going to glance and look out of curiosity but when you have people stopping and looking at you for moments at a time, it's overwhelming. 

My illness/disability is not a show. I am not putting on a performance for people to stop and stare. Some people really need to learn how to be respectful. 

It is hard at times dealing with this and even though sometimes I'm strong about it, there have been a few times where I break down. I cry and I do this out of frustration. I do it at frustration of always being sick and of having high hopes of achieving my aspirations and then having it taken from me within a blink of an eye,

I had to leave living on my own and being in college. After I had gotten a taste of freedom, I had to give it back. 

I've always had health issues and it's just the card I was dealt. When I was younger I would often wonder why me? Now I try to refrain myself from thinking that way, because no good comes out of it. 

Sometimes people are blessed with perfect health and others aren't and that's just the way it is. We need to realize that yeah maybe we don't have perfect health and physical strength but we have something so much more precious. We have inner strength.

Inner strength is not something that is easily acquired and because of our experiences we have gained and it is our secret weapon. It is our weapon that we use in battle. It is the absolute best weapon you can have when conquering and persevering in these constant battles brought on by illnesses and disabilities

Things that are appreciated and things that are not

Since I’ve been disabled I’ve noticed some things that I do appreciate from others and things that I do not appreciate when it comes to people’s actions.  

The Appreciated:

1.       Eye Contact. I appreciate when family/friends make eye contact with me because it makes me feel like they’re paying attention to the conversation and not only to my disability/illness.

2.       Behaving normally. I loved it when my good friend Jennifer came to visit and treated me the same as before. Just because someone is disabled doesn’t mean your mannerisms towards them need to change.

3.       Asking questions appropriately. There’s nothing wrong with asking questions about one’s condition as long as you do it in a well- mannered fashion. Chances are the more you know, the more you’ll both feel at ease when visiting.

4.       Support. The absolute best thing in my opinion that you can give is support because odds are the person with the disability/illness has highs and lows. Giving them support when they really need it can go a long way.

The NOT appreciated:

1.       Making No eye contact. No eye contact is horrible. I know you have good intentions because you don’t want to stare too much but not staring at all can be worst. It can make the person feel like you’re avoiding them.

2.       Trying to say things like “You look so good though”. I hate this one because it feels like the person is implying just because you look good at the moment means you can’t be THAT sick. They don’t realize that just because I look good at the moment doesn’t mean I’m not sick. You don’t see the person who is ill 24/7 so you don’t get to see them at their worst.

3.        When doctors say “It’s all in your head”. This really grinds my gears because multiple doctors have told me this and whenever they say it, I feel like screaming. My symptoms ARE real. It’s not in my head and I’ve already gotten a psych clearance to disprove that theory. (Even if it is a psychological illness/disability the symptoms are still real, just because it comes from a different area doesn’t mean your symptoms are any less real).

4.       Stop being my friend. It really sucks when someone who is ill/disabled loses friends because of that. Sorry I can’t go out all the time like before and just because I can’t doesn’t mean you need to be rude and stop being my friend.

                                          <3<3<3

On a different note…I GOT MY WHEELCHAIR! Now some might be thinking why I am happy about this because usually someone wouldn’t be happy about having one. Well for me a wheelchair equals freedom because prior to receiving it, I was hardly able to go out in public for one main reason of fear of falling. Now that I have a wheelchair those risks are decreased and I can actually get out in public a bit more and I can go fast! I haven’t traveled along fast in a long time now. So that is why I am happy about my wheelchair.

One of my family members was on the fence about it though. She said that she doesn’t like that I have one because it makes her feel stressed and it makes her feel like I am actually really sick and that she doesn’t know why I got one and that I don’t need it. When I heard this I was frustrated because I know my she is emotional and that she loves me and she doesn’t like seeing me like this but it made me upset on the fact that she said that because of the way she feels about it. I’m the one in the situation, I’m the one who has to go through this and you’re saying you don’t want me to have it because it makes you stressed out?

I also don’t like how she said “actually sick.” Actually sick? I’ve been sick! I am sick. A great portion of my family just tends to be in denial of the situation. It’s quite annoying because they need to face the reality. I’ve accepted it already and so should they. I know they act this way and say these things out of love but they don’t realize that it hurts.

If you’re someone who has a loved one who is ill/disabled and you make them upset by accident. Don’t feel too guilty, we know you had good intentions but sometimes acting/ saying things in a certain way that you think would be best really isn’t. I suggest talking openly with your loved one about it and come to an agreement on how you should approach things.

If you’re someone who is ill/disabled cut your loved ones some slack too because it pains them to see you not well and sometimes they are going to make mistakes. Most importantly, NEVER GIVE UP. Keep fighting and be strong because you are a warrior in this constant battle known as life. 

Being Home ridden

Being newly disabled without any access to a diagnosis or treatments to possibly relieve my symptoms has been different. I have been Home ridden for months now. It’s not exciting whatsoever. My typical day now consists of waking up, eating, sleeping, and lounging around the house. For some that may seem like the dream but for me it’s more of a nightmare.

When my friends from college came down to visit me, I told them how I missed going to classes and studying and they groaned saying “No you don’t…it’s horrible.” Now around that time it was midterms so of course they would have a negative outlook  on it considering they were stressed by the overload of essays, assignments, studying, and exams that they had to encounter. I’m sure however that if they spent 2 weeks in my shoes they would agree that being in college is probably the better situation to be in.

The truth is being home ridden by an illness/disability isn’t fun. I spend my days constantly suffering from whatever illness I have and there’s no way out of it. I have no treatments, no medications, and no techniques to lower my symptoms because I don’t even know what I have. Also in addition, my rheumatoid arthritis has been acting up so I’ve been in pain without any medications to relieve it.  So I’m just pulling through trying to make the best of it.

I have hardly gone out in public since I’ve been ill because to put it simply it’s dangerous. It’s dangerous because I don’t know when an attack is going to happen and if an attack does happen in public I can only imagine the worst. I could be frozen in place in an awkward position and twisting and tremoring for hours and would have no way of getting back home because of it. I could easily fall because of my walking difficulties and injure myself more. I can stop talking or stutter and slur so much that no one would be able to understand me and couldn’t help me. I could have a full body spasm that some would mistake for a seizure and call an ambulance when it wasn’t needed. So many different scenarios can happen and even though I know it’s dangerous, I’ve tried convincing my mother to let me go out but she says no.

The only time I actually do go out in public is when I have doctor appointments. That is pretty much the only time I see other people of society besides my family and friends. Since right now I only have a walker, I hope that when I do finally get a wheelchair, I’ll be able to go out in public more since there would be less of a chance of me falling.

In one of my other posts I slightly mentioned how I try to avoid social media pages now because I tend to feel bad when I see other people my age doing things I can’t. Well the same applies to when I see my cousin. My cousin is only one year younger than me and she is in college as well. I love her dearly but I don’t know I get kind of sad when I see her because she can go out and enjoy life so easily and I can’t. Ever since we were kids I always felt kind of sad when I saw her life in comparison to mine. 

She had a family where there were both parents and siblings and I had a family of one parent with no siblings. She had no health difficulties and I always did and was constantly in the hospital growing up. She had toys that I wished I could have but couldn’t. She didn’t have to worry about running around and playing and I did because of my lungs.

The list goes on but in all honesty, I am grateful for the things I did have in my life. I have/had a wonderful mother, I formed a great relationship with my grandparents, I got to grow strong because of my health issues, and I gained a step dad in the process who I now consider to be my true dad.

I know it’s not good to compare my life to others because everyone’s life is unique and different but sometimes I just wonder what my life would be like if we traded places for a day. I guess in this post what I’m writing really goes towards the saying: “Is the grass really greener on the other side?”

In the end, I wouldn’t change my life. I wouldn’t change anything about it because all the obstacles have made me into the person I am today. I wouldn’t be me if I didn’t go through hardships because those hardships made me strong and made me a fighter.

‘

Easter sunday and random feelings of mine

Yesterday was Easter, and usually on Easter day my family doesn’t plan anything and we’re usually separate. However, on this Easter my family decided to plan a trip to the lake to go jet skiing and venture in other fun physical activities. As I am newly disabled and chronically ill, I wasn’t so hyped. I knew I didn’t want to go the second I heard about it because I wouldn’t be able to participate in the activities and would feel left out.

 My parents wanted to go though and asked me to go since there was no way they would leave me behind to fend for myself. I eventually said okay because I knew my parents needed to get out since they have been stuck at home, hospitals, and doctors offices with me for the past 6 months. At the last minute though, plans changed to just having a party with friends and family. I didn’t want to attend this either because I knew there would be strangers present and I hate when people I don’t know stare at me and whisper among themselves about me. I was going to go and actually wanted to go near the end because I wanted to get out and have some fun but unfortunately my body had other plans.

 My neck, arms, and back twisted uncontrollably yesterday and my RA acted up which left me in pain. It has come to my attention that I suffer from dystonia which is a neurological movement disorder. Dystonia is what has been causing my body twisting in odd positions. If you are curious as to what it looks like you may see it on YouTube but I warn you its kind of hard to watch. I have it, and I even have trouble looking at videos of it. I know that I have some other neurological movement disorder along with dystonia but I haven’t been officially diagnosed with either. I’m just positive I have dystonia based off of my own research. 

Being newly disabled and chronically ill is hard especially when I’m only 19. I know that many other people out there are the same way but I’ve never actually met or let alone befriend someone online who is in a similar situation. To say the very least, I feel alone. I feel alone because I know no one who understands me. Sure, I have friends that listen but they can’t relate or understand me completely. I wish that there was someone I talked to or knew who was in a similar situation. I’m only 19 and it sucks being ill and disabled so young because before all this I had huge plans for myself and now that I’m like this those plans are out of reach.

I always planned on being the first person in my family to go to college and get a degree but it seems like that isn’t going to happen. I planned on becoming a veterinarian and helping animals along with volunteering and helping mentally disabled children. Now all those things seem unlikely and I kind of feel that I lost myself. I know I’m the same person but I’m somewhat different. I view life in a different way now. Before I never realized how precious it was to be able to speak, walk, write, and be in control of your body movements so easily.

Now whenever I manage to get out of the house, I see people who are walking, talking, and controlling each body movement with ease and I think to myself “Wow, they’re so lucky they need to realize how fortunate they are.” I now try to avoid social media pages because it pains me to see other people my age do things I can’t. I also get upset when I see posts about people complaining and whining about little things such as not being able to go see the latest midnight premiere of a much anticipated movie. It gets me upset because they complain of something so small when there are people in the world who are struggling through so much more and they’re complaining about not seeing a movie the night it comes out.

I know it seems harsh because I used to be like that. I used to complain over small things and now I look back and I can’t believe how I used to get upset over the dumbest situations. Yes, throughout my childhood I was ill as well and would get ill in my teens but this is by far the worst I’ve ever been. It’s worse than all the surgeries, hospitalizations, asthma attacks, severe pneumonia episodes, depression episodes, breathing treatments, and multiple medications. It’s worst because at least back then they knew what was wrong. Now, they have no idea and it’s frustrating because I can’t be given any medications or treatments. I have nothing to lessen my symptoms and pain so I just have to power through. It’s okay though because I’m a fighter, I was born to fight. I don’t know if you’re religious or not, but I happen to be catholic and usually when people get sick they pull away from god. In my case, my illness has gotten me closer to him. I know that god has a plan for me, one that’s bigger than the plan I had for myself. Therefore, I’m not mad this happened to me because no matter what’s to come, I know its all part of god’s plan. 

Facing the truth

As I first started developing neurological symptoms, I kind of ignored them and put them off as being no big deal. I thought it was perhaps normal to occasionally get double vision and have some minor tremors

 It wasn't till the symptoms kept reoccurring that I attempted to make an appointment with my physician. However, the physician I had at the time didn't have any openings for a while so at first I waited thinking it was minor anyways but then I decided to change physicians and get an opinion elsewhere.

As I went to the new physician his bedside manner was not the best at all but he did try to put together a picture of what was happening on the first visit. He kept writing down my symptoms and coming in and out of the room struggling to give me some kind of answer. Before he left the room to ask for some input from the other medical staff he blurted out "Hold on, I think you have MS".

At that moment my mother and I gave each other a look as if that was not correct at all. I had heard of MS before and I knew what it was and I had not expected to hear that I might have a neurodegenerative disease.

As the doctor came back in he said “You’re a very difficult case and I think it's MS, I'm not going to tell you what it is because you can Google it."

So at that point he said we were allowed to leave and as I was exiting the door of the clinic he said “If it gets worst, go to the emergency room."

Ironically, that's what happened later on that night. I was watching a comedy known as bad cops with my parents and having a nice time when all of a sudden my leg started tremoring pretty bad. My parents raised a brow at this with concern but I blew it off and then it tremored again and again until my body went into an uncontrollable muscle spasm episode.

I wasn't in control of my body movements and so my parents frantically called 911. I went to the local hospital that is not a good hospital at all and even though my parents urged the paramedics to take me to the other hospital that was much better and just a little farther away they disagreed so I was sent to the hospital with not good results.

My body would maybe calm down for a moment but then it would start up again and I was like that for two hours and in those two hours that my body was moving uncontrollably no doctor or nurse came to help. It was the paramedics that stood by my side. As a side note paramedics should really get more praise for what they do. I have been in so many situations where the paramedics were way more helpful and caring than the doctors.

The physician at the ER came to see me after my movements stopped that night and let me leave with a diagnosis of "Headache". Yup, that's right a headache. I didn't have a headache, I was not in control of my body and I had no answer.

As time followed I became worst, I began having trouble walking, I began having difficulty talking, and I couldn't do normal everyday tasks as I once did with such ease.

At that point, my parents urged me to move back home and drop my classes for the quarter at my university. I fought and fought to tell them that I couldn't and that I still wanted to go to classes but in the end I had to listen, I had to take a step back and focus on my health.

It was difficult for me to do that because I've always strived to achieve in academics and I knew that I was planning on going to veterinary school after my bachelor's degree and being only a freshman in college I did not want to drop so soon and risk graduating late.

Therefore, I accepted the truth in knowing that I had to put things on pause for a while and just focus on myself. I dropped in January and it is now going to be the beginning of April. The MS turned out to be incorrect because of a clean MRI so as of now I have no idea what is going on that is causing my symptoms.

I have accepted what's happened to me and I am aware that as of right now I am disabled but it's hard for my mom to come to that conclusion. When my stepdad and I discuss getting a wheelchair due to walking very slowly and getting exhausted quickly, my mother dismisses it saying I don't need it and that we're not getting one.

I'm not saying I need it 24/7 but I do need it in times that include excessive walking. Going to target now and walking to the front door from the parking lot is a lot for me. Especially when I have to walk the whole store and follow my parents around even though it's more like they walk and wait for me to catch up.

My stepdad keeps telling her I need one and I do too but she says that I don't because I am not disabled and that this isn't me. I understand that my mother is upset at the situation but her own emotional aspect should not interfere with me getting the help that I need. And also just because now I have a walker, and sometimes I can't talk normally, or do other things easily as I once did doesn't mean that whatever I have defines me.

My unknown illness is not who I am, and when my mom tells me “This isn't you" it's frustrating because this is the reality of my life at the moment. I don't know if I'm going to be like this forever or not but If i am like this forever, I'm okay with it because I know that there are people out there who are struggling with illnesses and disabilities as well and I'm not alone.

I also happen to believe that if it wasn't me that this was happening to, it would be happening to someone else and I would not want anyone else going through this. I would not want to have anyone else endure this because I know that I am a fighter. I have fought illnesses before and I know that I do have the ability to get through this and even if it is forever I know I can handle it and power through while putting a smile on my face. So in a way I'm glad this happened because I wouldn't wish this on anyone else to suffer through. I've always been glad to help others.

Facing the truth can be difficult whether it's facing the truth that you're sick or disabled or facing the truth in something like having to come to terms with needing less caffeine in the morning. My point is, whether you’re sick, disabled, or neither facing the truth can be very nerve wrecking (Haha joke here, nerve wrecking...i have problems with my nerves get it? :P) Okay that was a really lame joke but anyway no matter who you are and what you're dealing with there is going to be a time in your life where you're going to reexamine things and start looking at life in a different perspective.

For some, it may be deciding whether you're more of a an athlete or a bookworm, others it could be  finding new love after some time healing from a broken heart, and some like in my situation it's knowing that little things such as being able to talk and walk without effort is so precious. Before I never put much thought when I walked or talked or even wrote with a pencil because it was second nature and now I can't do those things as easily and I now realize how grateful I was to be able to do those things so easily at one point.

If you still have your health and aren't disabled, treasure it with you. Those little things that you don't think much of are actually very huge to people who can't do them as easily or at all. For those who are unhealthy and/or disabled stay strong and fight. Fight with all you have because this life is beautiful and you deserve to be a part of it and make the very best of it.