Wednesday, January 21, 2015

Personal Connection vs. Wifi Connection

"The most desired gift of love is not diamonds or roses or chocolate. It is focused attention."

When I read this quote, I had one of those epiphany moments. I'm realizing how true it is that we desire focused attention; but the thing that really stands out to me personally, is how rare focused attention is these days. Focused attention is so rare that I fear being the center of someone's attention. When I'm in a group and I begin to tell a story or state an opinion and suddenly, all eyes are on me, I have a mini panic attack inside. All of those on me, listenting to what I'm saying. 

Now a days, we are so used to having distractions. Mainly, our cell phones. Cell phones have so much packed into them now that you could be on your phone for hours without even realizing. I will be the first to admit, that I spend more time on my cell phone than I should. I know that. And I hate that it's true. It's funny how we always justify our time used on our cell phones and laptops. I'm not going to tell a lie and say that I could live life well without my laptop. I am absolutely a laptop addict. I check facebook daily, just because it has become so routine at this point that it's second-nature. I browse pinterest for inspiration for studying, the future, anything really. I write, I blog, I keep in touch with friends. I wouldn't say that spending a lot time on my laptop is necessarily a bad thing. It just really depends on what I'm doing. Sure, 5 hours of netflix isn't a wise use of my time. But for me, writing, which I do quickly and more efficiently on the computer, is theraputic for me. It helps me to develop my writing skills and to express myself. I think the same way about certain sites that I browse as well and blogs that I read. 

The point I think I'm trying to make is that these distractions leave such little room for focused attention. I can name multiple times where I haven't given someone my full attention because I was distracted by an incoming text, or my instagram feed, or twitter, or a game on my phone. It's ridiculous to think that just because we have that wifi connection, our real, personal connections are dwindling. So, I'm deciding to scale back on certain social media and electronics. Little things that you do every day become routine (like checking facebook) but it takes 21 days to make or break a habit. Making small changes can greatly impact the way we live. Some changes I am going to make in order to focus my attention better are: signing out of facebook instead of keeping it  constantly logged in and waiting for me, deleting certain time-consuming aps off of my phone and putting my phone away when I'm with friends/company.

Yes -- social media, cell phones and laptops are great and even necessary in this world but I want to encourage you to take a step back. I can gaurentee, I'm still going to spend time on my laptop every day for school, blogging, writing and probably a little netflix too. But it's those small changes, and the awareness that we are lacking personal connection because we have a wifi connection, that should encourage us to make those changes in our lives.

Friday, January 16, 2015

The ER Is So Much Cooler On TV

To sum up the last few days, the word I would use is overwhelming. Three hospital trips in the last 7 days and a ridiculous amount of stress. Sometimes I don't realize the effect that stress has on me until I'm in over my head. On Wednesday, I was debating going to the hospital again because I've had a very sore spot in the back of my knee with a raised spot and blue discolouration. I was having cramping in my knee, calf and thigh. There was heaviness in my chest and every time I exerted myself in any way, I was gasping for air. I began to get a cramping and what felt like a muscle twitch in the center of my chest. Needless to say, it was a little terrifying.

One of the things my Endometriosis specialist had warned me of when I started the medication 'Visanne', was the possibility of blood clots. Hormonal medication can have that effect for some reason. I had almost all of the tell-tale symptoms of a blood clot. Plus, I was on a plane just a few weeks ago, which can add to the possible-bloodclot-equation. I went to the hospital, not mentioning any worry of a bloodclot, and just told them what symptoms I was having. I had an x-ray and was told I have 'tendonitis'. Which is just bull. Sorry, doc. The symptoms got worse, more painful and the heaviness in my chest and shortness of breath started. I called telehealth to see whether or not I should go to the hospital, or wait it out. They suggested that I needed an ambulance to come get me. I decided to pass on the ambulance, not wanting a big scene, and I felt like I could handle it. The stress of knowing that a doctor had just told me that I should probably be in an ambulance freaked me right out though. Which made breathing even more difficult. I called my mom and by the time she picked me up and drove me to the hospital, I felt like I could barely talk because it wasted so much breath.

This time at the ER,  I expressed my concern of a blood-clot because the symptoms were becoming much more prominent and even if it wasn't a blood-clot, it could be ruled out and we could move on to something else. Now after this whole experience, I officially hate the Bracebridge ER. If someone has 9 out of 10 symptoms of a bloodclot and is on medication that specifically warns them to keep an eye out for blood-clot symptoms; they should probably be tested for a blood-clot. The doctor I saw refused to test me for a blood clot, for the one reason being that my leg was not swollen. Yet, 50% of people who have bloodclots that cause pulmonary embolism and death, do not have ANY symptoms. Not swelling, redness, pain in the leg/knee/etc. Instead the pain in the back of my leg and knee was pinned on fibromyalgia (because apparently that's an excuse for any kind of pain) and my chest pain was blamed on acid reflux and stress. I can see how these things could be true. But this pain was different than I've ever experienced.

Now, I am not claiming to know more than a doctor. I want that to be clear. But what I can't understand, is that if someone has reason to believe that they may have a certain condition or something going on in their body, why not just ease their mind and test them? And how terrible would you feel, being the doctor who refused to test someone for a blood-clot and sent them home, then they later suffered from a pulmonary embolism and died. Just because you would not test them. I understand that tests cause the hospital money and it takes up time, but you are the only person who knows what it feels like to be inside of your body. If you feel that there is something wrong, you have every right to get it checked out.

I still haven't gotten anywhere with this issue. The pain is still present and I'm still confused as to what it could be. I want this to be clear: I am not a hypochondriac. I am simply someone who knows that her body is very susceptible to health-problems and I am on multiple medications that can complicate my health more than they help it sometimes. It's really hard to feel like no one even believes that you are really in pain. Especially when you're scared. I just want to encourage anyone to pursue help if you feel that something is really wrong. It's always better to safe than sorry. In conclusion, since I haven't figured out what is going on with my body yet, I'm going to keep pursuing this until I find out what the cause is or at least find something that eases the pain. If you come across a doctor that won't listen or is stubborn about your pain, find a new one. Get a second opinion. If the ER won't help, go to your family doctor, or a walk-in doctor. If you don't feel assured, then find someone who WILL assure you and work things out with you. It's worth it.

Tuesday, January 13, 2015

Tests, Surgeries + Everything In-Between

Today I finally got in to see an Internal Medicine specialist. It's been a long-time coming. Waiting for a specialist sucks; mostly because you're in pain during the whole waiting process but you know that there is nothing that can really be done until you see the specialist and get their opinion. And even once you get their opinion, you have to book tests and surgeries and procedures that will cause you to wait even longer. But at the same time, you're so excited to finally be figuring out what the heck is going on inside your body.

It's been decided that I need more blood work (Really? Again? I've already had bloodwork done three times this month), an hs CRP test (a test for determining a person's risk level for CVD, heart attacks, and strokes), an ESR test (a test that is used to help detect inflammation associated with conditions such as infections, cancers, and autoimmune diseases), a colonoscopy (a test that allows your doctor to look at the inner lining of your large intestine), an endoscopy (procedure used to examine a person's digestive tract), and a laparoscopy (a surgery that uses a thin, lighted tube put through an incision in the belly to look at the abdominal organs or the female pelvic organs). Apparently I'm going to have a couple more months of hospitals, doctors appointments, tests, surgeries, procedures and rest.

When your body isn't functioning properly, it's hard to know how to deal. Eventually, you learn things that help and things that hinder but I can't say that I have ever fully learned how to deal with it. And by 'it', I mean ALL OF IT. The physical and emotional pain, the frustation, confusion and unknown causes. I still break down with frustration as to why my body does this and why this is the life I am stuck in.

To provide you with a small glimpse as to what it's like (some-what) to deal with frustration with your body could be as simple as saying, think about how you feel when you have the flu. Another one could be, if you have ever broken a bone, or injured a ligament or sprained something; think about all the things you could not do and how frustrated you were that your body physically could not meet your demands. It's like that -- but with your blood and your organs, and your brain and different parts of your body. And the worst part is, sometimes you don't even know WHAT is causing it, and even when you DO know what's causing it, you still may never find out WHY its happening.

Throughout the next few months, I'm sure I will face some hard times. I'm also sure that I will see the blessings in diguise throughout all of it too. I want to ask anyone who reads my blog, to please, have patience with me. And thank you, for listening to what I have to say. It means so much to me that people are supporting me and reading my blog. I am overjoyed with the response I have received so far. Update will continue and so will rants and vent-ing sessions!

Monday, January 5, 2015

"It's All In Your Head"

You know what sucks? Ignorance.

You'd be surprised how often people tell me what to do to 'fix myself'. Or when you hear something like, "Endometriosis? My aunt had that and she was fine." or "You have low iron? Just eat a lot of meat and greens and you'll be better." It moments like those when part of me wants to laugh in their face and another part of me wants to punch them so hard in the head that they'll see stars.

Dealing with the ignorance of others is one of the biggest challenges in the life of someone with chronic illness. The thing I treasure most in people nowadays is when someone can take my words as truth. I don't care if you can't understand what I'm going through. I would never expect you to be able to fully understand it unless you went through it yourself. The most important thing to me is that my friends and my family believe what I say. You are the only person in the entire world who knows how it feels to be you, to live in your body. What if you were in a lot of pain, say in your stomach. Say it was unexplained and ongoing. You go to the hospital and they order bloodwork and an ultrasound. Both come back perfectly fine. "Everything looks normal!", the doctor says and sends you on your way. Afer this, everyone begins to treat you like you're making a bigger deal than it really should be. People start treating you like you made it all up or telling you things like 'it's all in your head', but you really are in pain. How do you think that would make you feel?

Pain a sign that something is wrong. Even if nothing physically looks wrong. When someone looks at me and says, "But you don't look sick." I don't even know how to respond. 'Okay so because I don't look sick, I must not be sick at all.' It's hard to know if that sentence should be taken as a compliment or an accusation. So, I don't look sick, even though I am -- meaning I took the effort to still get ready even though I feel like crap? Or do you mean,  I don't look sick at all, therefore, I'm just faking it and it's all in my head and I'm really not even sick because I were really sick, I wouldn't be able to get out of bed and get ready? I've heard both of these things and I've been accused more than once of not actually being 'sick' or 'ill'. Let me help you understand something. Autoimmune diseases and chronic pain or illness won't usually kill you. Endometriosis isn't going to kill me. It will cause me loads of pain. It will cause the need for perscription drugs and lots of sleep. It means that I will need multiple surgeries if I want to feel a bit better. But it won't kill me, it will just make my life harder than it would be if I didn't have endometriosis.

Just because someone is sick and in pain does not mean they want their appearance to reflect that. Some days I feel so bad that I don't bother doing my hair or putting on make up or even showering. But other days, I do shower and spend time on my hair and put on makeup, and wear jewelry and dress nicely. Just because someone is sick does not mean that every day is a day that they are unable to move and stuck in their pajamas. Some days are better than others and we never know when a bad day or a rough patch is coming. You may feel well enough one  day, to have a day packed full of events and the next, you may have to call in sick because you over did it and you can barely get out of bed. It's a balancing act that is almost impossible to control. Having someone in your life that trusts you when you tell them how you feel is so important. And that's what I've come to look for in friends. If someone you love has chronic illness or pain and you and trying to figure out how to be there for them, my advice to you is to tell them "I believe what you are saying to me." Ask them if there is anything you can do for them. Most likely, they won't send you off with a list of chores. When a friend asks me what they can do for me, I'm most likely going to say, "I could use some company." or "Come hang out and have a tea with me so we can catch up." More than anything, we want someone who is willing to be our friend even when we can't do all the things that friends usually do together. Knowing that someone is your friend for who you are and because they enjoy talking with you is so much more meaningful than someone who hangs out with you just so you can go to yoga class together or go out and party. I've learned a lot about who are my real friends over the past few years and who are the people that didn't care enough to stay in my life when thing got hard. Go find the people that care about you and that you care just as much about and put effort into those relationships, because they are the ones that matter.

Friday, January 2, 2015

"She could never go back and make some of the details pretty. All she could do was move forward and make the whole beautiful." - Terri St. Cloud

This blog post is going to be short & celebratory one! I made my way to the hospital today for some much needed doctor advice. After some blood tests and an exam I was referred to an Internal Medicine Doctor. They will be calling on Monday to set up an appointment. This is no way will take away my pain or fix my problem at the snap of a finger, but it is a set forward. That step forward is the exact little encouragement that I needed. Now that I know I am a step closer to figuring out these problems.

I've had a very difficult few weeks but I'm ready to move forward and solve these problems! Yes, the pain will sometimes get to us and make us feel weak and vulnerable. But when a wave of positivity hits you, you hold on to it and run because that's what gives you hope.

Thursday, January 1, 2015

The 'OMG-I-Have-The-Flu-And-Im-Never-Going-To-Feel-Better' Status & The Effect It Has On Me

I know that I've already wrote my post for the day. And I also know that this past week I haven't been all that committed to this blog. This blog is for my mental health more than anything and I write when I feel that I need to. After scrolling through facebook and twitter tonight, I happened to see a common theme. This common theme seemed to be along the lines of I-Have-The-Flu/Cold-And-I-Feel-So-Bad-And-I-Dont-Think-Im-Ever-Going-To-Get-Better. The flu sucks and having a cold sucks. I feel ya, trust me. You get nauseous, feverish, chills, sweats, vomitting, diarreah (sorry for that, but its the truth), muscle aches, headaches, etc. Not only that, you can have to call in sick to work or miss school and cancel all the plans that you had because you need to rest. Sucks doesn't it?

Although, the great part about getting the flu is that it usually only last one or two days. Some of you might wonder why that seems 'so great'. I bet I would wonder that to if I didn't know any different. Once you've lived through 9 consecutive years of pain, the flu doesn't seem all that bad. 24 hours of pain and vomitting and all that crap -- then it's over. It's done. It's out of your system. If only I could set aside 24 and get Endometriosis, Anemia, Rheumatoid Arthritis, Fibromyalgia and Insomia out of my system. WOULDN'T LIFE BE GRAND??!!

Like I said, I know how much having the flu sucks and same with having a cold or pheumonia or whatever else you can get that is related to the family of viruses. But let me just say, when I'm scrolling through facebook and see status after status complaining about how awful it is to have the flu and how hard it is to get out of bed to make food or go to bathroom or how 'IM NEVER GOING TO GET BETTER' -- It really friggin' pisses me off. Probably because the majority of the people posting these statuses will be fine and dandy three days from now. Maybe it's just my own annoyance, maybe it's me being oversensitive, or maybe its jealousy -- but I know that I will never truly get better. And that hurts me. It hurts to know and accept that I am gaurenteed to never feel well again every day for the remainder of my life. It hurts to know that people that I love don't understand that and see the effect that it has on me. 

So as a reminder, I want to encourage whoever reads this to be careful with your words. Just take a minute and think about what you're saying. You've only gotta deal with that pain for a little while, don't hurt someone by saying that a little while feels like a lifetime because some of us WILL deal with it for a lifetime.

Anxiety Permitted

After my last post, I've gained a little confidence to be able to do what I need to do. Tomorrow I'm finally going to go to the hospital and get the tests done that I have been avoiding. My nerves about this have not diminished but I guess they have started to lessen. When you have Chronic Illness there are certain pains that you learn to deal with so much so that when you feel them, you almost just ignore them. But then once in a while, there may be a pain that you don't recognize. It's not familiar, you don't know how to make it go away and you don't know what could be causing it. This is the pain that causes me great anxiety.

This anxiety has been present in my life for the last month and has gotten increasingly more present as time passes. I do not want to admit that there may be something seriously wrong. I already have enough wrong with me to feel like I can handle another disease or illness. Maybe, it's nothing big. But maybe it is. After weeks of somewhat pursuing it and deciding to take a step back and not look into it any further. Letting the pain wear off a little and convincing myself that I don't need to get any tests done. Then feeling like your getting smacked with this new and unusual pain all over again. 6 weeks later and it still has not subsided. You finally admit that there is something going on. 

At this point, I know I need to go get tests done. The unpleasant tests that are painful, humiliating and that make you feel like a pin-cushion. The doctors appointments and time spent in the hospital that makes time mover slower than it ever does in the real world. The time away from the comfort of your home and the company of loved ones. But it needs to be done and life will go on.