Wednesday, December 23, 2015

OWN IT

When you spend as much time alone as I do and when you're in as much pain as I am, you tend to encourage yourself in whatever way makes sense at the time. For example, I'll say to myself "Okay, if I get off the couch and shower, then for the rest of the day I can drink tea and watch tv." It's all about convincing yourself to do the things you need to do and get just enough exercise, in order to rest later. If you do too much, you'll be in more pain, if you don't do anything, you won't be getting the movement you need. It's just a lot of convincing, at least for me it is.


The other day I was in the bathtub and I was feeling really good (emotionally). I had just got some really great feedback on my previous blog post, and I was so happy about it. As I was finishing up, I said to myself out loud, "I'm a freakin' badass," and as I stood up to get out of the tub I go, "Ohhhh gosh." and wince in pain. And then I laughed. For about ten minutes.


I tell you this because in some ways this perfectly describes my life with chronic illness. And a lot of times people tend to say to me, "You look like you're feeling better!" just because I laugh or make a joke. Which is really annoying. It's like, do people really expect that because I have a condition and live with chronic pain, that I should be grumpy about it forever? If I lived my life refusing to accept my illness and constantly living in a state of anger about it, my life would be horrible and a million times more painful. Emotional stress and anguish just exasperates my symptoms. The thing is, the bath tub thing, that is how my life is.


Some days I wake up after getting a good eleven hour sleep, and I finally feel okay for once. I don't wake up with a headache, so I'm off to a good start. I have a coffee or two, I start to get ready. Then out of nowhere the pain starts. And, it's annoying, but it gets to a point where it's so expected that it's just humorous to me. I don't even know if that makes sense to anyone else. But it's kind of like, of course, on the day that I feel okay because I had a good sleep for once, and I'm feeling positive and happy, the pain still joins me. And sometimes the pain is severe, and I need to admit defeat and go relax on the couch or in bed. But other times, the pain is present, but I just want to enjoy the day and do what I was planning to do. Those are the times when I say, "I'm a freakin bad ass." Because really, I am. 


I'm a badass because I'm constantly in pain. I'm a badass because my legs hurt after standing for 5 minutes straight. I'm a badass because I wake up with a headache almost every day. I'm a badass because writing this blog post hurts my hands and my right arm is beginning to feel weak and shake. I'm a badass because these things happen to me like clockwork and I still go on. I still continue. There is nothing weak about that. 


I'm learning to own my illness. Illness often tends to control our lives. But, if you own your illness and you accept it, it can't own you. If you learn how to cope and how to manage your illness, you can keep that bit of control. I've learned to plan  things out according to how my body will respond. I know if I do laundry and clean my room today, that I'm not going to have the energy to go out groccery shopping tonight. And if I do both, I need to plan to relax the rest of the night, and sleep in the next day. I know that if I need to wake up at 8am, I need to go to bed at 10 to feel rested; so I'll have to take a sleeping pill in order to get to sleep and wake up at the right time. These are the things that you learn to control when you know how your body reacts because of illness and pain.


Like I said, I'm learning to OWN my illness. I used to feel embarassed that I couldn't keep up with my friends, I couldn't do the same things at the gym that they do, that my body reacted differently after having a drink at the bar, I got exhausted after something that is so seemingly easy for them. I used to be ashamed and embarassed that I couldn't do it with as much ease, and it caused me to push myself. Pushing myself to a point of more pain, and more exhaustion; which caused anxiety, stress, and a feeling of weakness, which just makes things worse. I have learned that there is nothing to feel ashamed about because I am fighting a battle every single day, every moment. Every moment, I feel pain. I don't have a moment of normal ever anymore. And because of that and how it affects me, I need to own my illness and take care of myself. 


I'm still learning how much to push, and how much to sit back and try to relax. Some days the little things take enormous effort. Some days the little things feel okay at the time, and I pay for it later. Some days taking a walk makes me feel happy and good that I'm able to stretch my legs and get some fresh air. Some days taking a walk, I cry half way through because my legs burn and I want to collapse right then and there. My pain is predictable but also unpredictable. I learn to predict which things will cause me pain, but it's not always easy to know how bad the pain will feel or when another symptom will show up out of the blue. These things, I am still learning.


But the one thing I know for sure is that I am not ashamed of my illness because every day I have a million little victories that I fight for. It's taught me not to take the little things or the big things for granted. It's also showed me who truly cares for me and accepts me for who I am. I've lost a lot of friends over the last few years, and I have moments when I miss them and the fun we had, but mostly I'm thankful that the people that don't care enough to walk through this journey with me have been weeded out. My illness has taught me how important it is not to cast judgements on others. If I were judged on how people see me sometimes from the outside; I'm sure they would assume I'm lazy and unmotivated. But what they don't know is my story. I've learned to not judge people from what I see of their life, because I don't know their story.


Your story is important. Don't be afraid to share it. You never know who it might help or whose life it might change. Don't underestimate the power of sharing your story.

Saturday, December 19, 2015

The Pain Filter

I debated whether or not to write a post today. Today was a long and exhausting day. Not much different from any other day that I leave the house. Except on this day, I didn't cry alone in my room or in the bathtub so I could easily wash away the tears in a safe place, by myself like I always do. Today, the last thing I wanted to do was think about my health issues and especially cry about them. But that is in fact exactly what ended up happening at my family Christmas party. Extended family Christmas party with cousins, aunts, uncles and all. Normally, I'd be humiliated. At first, I felt so embarassed for crying and letting my emotions get the best of me when asked about how I was handling things. But, I'm realizing that just because I cry in front of someone, doesn't mean that I'm weak. Crying isn't weakness. What I really learned today is that I've gone through hell and I'm still going through hell and I am so much stronger than I ever realized.


This is something I don't like to say about myself; that I'm strong. I find it strange for some reason to label myself as strong. Although it's true that I know better than anyone the strength I have had to summon to live through this past year, and especially these past couple of months. I have found a strength that I never knew I had. And sometimes, maybe people don't see it. I made a commitment when I started this blog to be honest and open and try to explain to the best of my ability, how it is to live with chronic pain. For me, writing is an outlet that helps me and makes me feel better. It's also a way for me to feel like I am contributing something to certain people in the world. Because of the commitment I made to this blog, I've decided to be as open as I feel I can be. That includes on this blog, on facebook, on instagram, etc. It bothers me when I know someone is struggling and hurting yet their facebook profile is filled with happy memes, and smiling photos. If you're hurting, that's okay. If you're going through something, that's okay too. Social media wasn't designed for us to express our hurt and our pain. Social media provides this filter that we view other people's lives through. A happy filter, an excited filter, a success filter, a perfect family filter, a relationship-goals filter. But there's no depression filter, no mental illness filter, no chronic pain filter, no disease filter, no hurt filter, no loneliness filter. 


What I'm getting at is that I've had a few people comment that I should "probably keep personal things, personal." Let me tell you this, we live in a world where social media is the norm and we find out that our friends got engaged on facebook through a cute photo or a heart-warming status update. We see photos of people's weddings on our timeline's instead of seeing it after it was pulled out of someone's wallet. We learn of pregnancies through adorable photos that suggest a growing bump, or a pair of excited soon-to-be-parent's. So if this is normal, if this is acceptable, if this is the world that we now live in; why can't I share my news? My news isn't beautiful, adorable, heart-warming or exciting. My news is sad, painful, upsetting, and troubling. But it's honest and it's real. This is my news and I believe that if social media is going to play such a huge role in our lives, that it shouldn't just be a place for the happy filter, but for the pain filter as well.


I am well aware that some people may read this post and shake their heads or just scoff at the fact that this blog exists at all. I am well aware that pain is personal, but so is happiness, so is joy, so is love and family. But we share those things openly, and pain shouldn't be any different. Especially in the case of someone whose life is so constantly affected by it. The honesty and openess that I have maintained throughout this journey on social media has brought me so much hope and so much support. I don't know where I would be if I didn't start this blog, or if my online support groups didn't exist, or if I didn't receive the loving and supportive comments from facebook friends, kind strangers and fellow chronic pain lifers. I guess it's hard for some people to understand, but being in my position, the online community is one of the better places to find support. I just want to be clear, I'm not writing to post to defend myself to those that may think I share too much or to try to convince anyone that what I'm doing is right. I'm just doing what I always do; I'm writing honestly about what I feel. 


If social media is a part of our lives, then I'm going to envoke the pain filter. And that is not a negative statement. 

#painfilter #LetsGetReal

Tuesday, December 15, 2015

Fight Again

"A strong person is not the one who doesn't cry. A strong person is the one who cries & sheds tears for a moment, then gets up and fights again."


For a long time I thought that the pains that I felt were normal. They were my normal. Still are. I think in cases like mine, it takes us so long to realize that there is a real problem and for our doctor's to take it seriously, that getting a diagnosis is a long and gruling process. Which means, getting treatment is a far away dream.


As things have progressed for me regarding my symptoms, I am becoming more aware of the effect things are having on my body. I'm used to the little things, the smaller symtoms. But the big ones, the new ones, are scary and it is hard to accept that right now, this is how  I have to live. I have to live with knowing that I may suddenly lose bladder control. At the age of 22 this isn't an easy thing for me to accept. I have to learn to manage when my arm goes weak and begins to shake and my fingers twitch. I've learned to cope when I get agonizing pains out of nowhere, caused by seemingly nothing, in a random body part. I'm having trouble accepting that my cognitive functions are slowly deteriorating. My mind is slower than ever, my short term memory is horrible, I lose my thought mid-sentence regularly, I forget words, sometimes I even forget how to swallow and it makes me feel like I'm going to start choking. These things have been big, scary, life-changing things.


As you all know, I had an MRI just over a week ago and I got my results back. Completely normal. So far. After going over symptoms and a lot of other tests and what not with my doctor, he informed me that he does believe that my syptoms could very well be caused by Multiple Sclerosis. I guess MS can be active and present but now show up on an MRI for years. The next step we're going to be taking is a referral to a neurologist. I'm not totally sure yet of what this will consist of but it will likely be a variety of nerve tests, reflex tests, optic tests, and lumbar puncture to check my cerebral fluid. 


I was of course hoping for a firm answer; either you do or do not have MS, or you do have something that we can treat. But that is not the case. I've got another maybe. And it's hard to accept the maybe when it makes you feel like your life is in limbo. Although, hearing from my doctor that he does believe MS is likely causing my symptoms has been a bit of a wake up call. Knowing that this could be a life-long problem for me and if it is MS, that it will continue to progress and continue to get harder. I think I handled the news pretty well. I didn't cry or get mad.. I just continued on my day. But the questions and reality of it all is hitting me now and I'm not sure what's next for me.


Over the next little while, I'd like to go forward with a bit of a plan for my life. Right now, my life is basically on hold while we wait for an answer but it's looking like it might be a while until that answer arrives. I'm not sure physically what I can manage anymore as almost everything at this point causes a flare up in pain and spasms. I'm not sure if I can get back on a normal sleep schedule with the intensity of my fatigue and with insomnia it makes that even harder. As you can see, this is all causing me stress and anxiety which makes the pain worse. The vicious cycle of chronic pain. 


I'd appreciate any words of encouragement and prayer and positivity that anyone has to offer. Often times, people aren't sure what to say to someone who is living with a chronic illness or chronic pain. Here is my best advice for those of you who aren't sure what to say: People who live with chronic pain usually struggle to hold it all together, we are normal people who deal with normal struggles like dating and laundry as well. It's okay to ask us how we are really doing, if you really want to know because you care. It means more to me to be able to honestly answer the "how are you doing?" question than it does to mindlessly answer "i'm fine" to the classic "how are you?". My illness, no matter how much I wish it wasn't, is a big and dominating factor of my life -- we need to be able to talk about it and not feel like we're asking for attention or looking for pity. 

If you're looking for something nice or encouraging to say, try something like:
"I'm here for you."
"I'm praying for you."
"Do you want to talk about it?"
Or if you're a close friend and you want us to open up,

"How has your illness been effecting you lately?"
"How do you feel emotionally?"
"Is there anything I can do to help?"


Often times, we're not looking for someone to do our chores or hold our hand at appointments. We're looking for people that we can openly talk about our lives with, just like anyone else, it's just that our lives look a little different than your lives. We experience different types of struggles. But that doesn't mean we should have to hold it all in and not talk about it.


I hope that all of you out there that are dealing with struggles right now are feeling loved and cherished tonight. Thanks for listening. ♥

Saturday, December 12, 2015

A Little Thing Called Hope

Anxiety is frustrating and difficult to overcome. I deal with anxiety regularly and I usually handle it fairly well, but it is absolutely a struggle in my life. As I am waiting on results from a test that could potentially change my life, my anxiety is in overdrive. I'm surprised I haven't gone into full blown panic attack mode yet. I feel it coming though. And because I feel it coming, I'm trying to get the thing out of the way that's giving me anxiety.


A week ago today, I had an MRI of the brain and cervical spine. I was told that my doctor would have the results within the week. My GP's office has had the results for at least two days now. I've called and asked to see if they were in and was informed that they were indeed in, but my GP hasn't looked at them yet. Which is making me even more anxious knowing they're just sitting there in the office, untouched. I've decided to just go to the walk-in clinic tomorrow to get my results. Because that's the best way to get them at this point.


I don't think it's the idea that something might be wrong that is giving me anxiety. In fact, I know that isn't what is giving me anxiety. It's the idea that everything could be completely fine. Because, I am in pain. I know I am experiencing pain. What I don't know is why or what is causing it, or if there even is a cause at all. My anxiety is based around the thought that the results will come back revealing nothing out of the ordinary and I'm not sure what to do next. I've lived with this hopelessness of not knowing what is wrong, but we've run so many tests and did so many procedures without any answers coming up. I know how I will feel if I'm told the results are negative. Hopeless.


I prayed about this yesterday because my anxiety has been driving me mad. I prayed that no matter what happens, that God will help me handle it. Help me to move on and decide what to do next. Later in the evening, I picked up a book my mom had found for me at a second hand store called Pain: Learning to Live Without it. I had automatically been annoyed by this book because my problem isn't learning how to live without pain, but how to live with it. This book so far has been a pleasant surprise. It may be just the thing I need to focus on if the results do in fact come back negative. 


I'm only a few chapters in but already I am appreciating the author and his way of understanding what it is like to live with chronic pain and suffer from Chronic Pain Syndrome. He explains the different views the world has on chronic pain and what a huge epidemic it has become. He also understands that chronic pain needs to be taken seriously; because even though there isn't always a reason for our pain that can be found in a test, the pain is still there. The brain has a pain center, and if that pain center sends out signals, you will feel pain. It's like when an amputee experiences 'phantom limb pain'. They feel pain and cramping, etc. in a limb that has been amputated, or in other words, they feel pain in a limb that is no longer there. Which is kind of like what it is like, in some cases, to live with chronic pain. This is just the start of some of the things I have been reading that have so far, given me a little hope.


I think that what I'm trying to say is that, if the results come back negative, this book is going to be my guideline. Chronic pain sufferers often feel misunderstood because the world views chronic pain either as being caused by injury or disease, a psychological problem or malingering. Which means, it is thought that pain can really only be caused by an injury or a disease or the notion of someone being in pain because it is "all in their head", or the last one "malingering", which means, people think that others sometimes exaggerate or invent pain symptoms to seek attention or financial benefits. What I love about this book (so far) is that the author (Dr. David Corey) completely SHUTS DOWN these views on chronic pain by refering to them as inadequate.


Back in 1664, Rene Descartes developed the Descartes' theory. The theory wasn't completely correct and ended up in a lot of disastrous surgeries involving cutting out parts of the brain that were believed to be causing pain. This was done because Descartes' theory explained that when harm comes to the body a response is produced on the skin, which then sends a signal up through to the body to a "pain center" in the brain. From there, the pain would operate as an alarm bell to warn of damage occuring to some part of the body. After realizing that the theory wasn't fully accurate, more studies were done and theories made. Eventually it was learned that it is possible to have damage without pain, and pain without damage. Descartes was partly right -- a signal is sent toward the brain from the site of an injury. But it is not a pain signal, it is a harm signal. And it doesn't always result in a feeling of pain. 


It explains in the book that the brain is "Control Central", where final decisions are made. Dr. David Corey explains that when you cut your finger, the pain that you feel isn't in your finger, it's in your brain. We perceive the pain to be in the finger because of the way our bodies work. For example, when you see something, it seems you are seeing it with your eye. But, that's only the beginning. The back of your eyeball, the retina, translates the light into nerve signals, which travel to various places in your brain. So, the final act of "seeing" occurs within a part of the brain (the visual cortex). It is similar to this with all of your senses. OKAY, here is where I find things get really interesting in terms of Chronic Pain. It is now understood and accepted that the pain system and the brain are procuding these pain message themselves. Again, like in the case of 'phantom limb pain', the brain produces a mental picture of the limb as though it were still there, and the person feels it there, because the brain is missing the normal sensory signals that it used to receive from the limb. Even some quadriplegics (who have no sensory below the neck) experience pain in their lower limbs.


This, is a direct quote from the book because I won't be able to explain it properly myself..

"When the brain receives harm signals and translates them into pain sensations, they are then pinpointed on the brain's own map of the body. The message the brain applies to the map-site of the injury produces sensations that we feel as pain back where the injury occured. The brain does not send pain signals directly to the affected area. I know it feels as though the pain is "out there", in your toe. But, in a sense, the brain is playing a trick on you. This is just the way the system has developed and it works reasonably well -- except when the pain messages no longer serve a function." 


Alright, I know this blog post is getting ridiculously long but I'm just trying to explain a little of what has made me gain a slight bit of a hope in the case that my results come back negative. I'm still hoping and praying for a real answer, because some things have yet to be ruled out. But, if there isn't an answer that we can find; I know that my pain is valid and that I'm not crazy for feeling it. I can learn to manage it. Hopefully, with the help of this book (Pain: Learning to Live Without It). 








Tuesday, December 8, 2015

Waiting Is Hard

Day 3 waiting on results. Waiting for results is a really brutal form of torture in my opinion. Personally, I feel that we should have the right to know what is going on inside of our bodies. The problem is that we may not understand what we're seeing when we look at a test result; but I think we should get some sort of system figured out so that as soon as the results are in, we are informed. I can almost gaurentee that someone, somewhere, has already looked at my scans and made some sort of a decision. Yet, I am still here, wondering what might be going on in my brain. I get it and I know that some people wouldn't handle it well; some people are terrified there's a chance they could be ill. But when you are already ill and have been for as long as I have, you want all the answers you can get. And when you've been told "The test results were negative," so many times, you start to wonder.. 


The dilemma I'm finding myself having in this waiting period is how I actually feel about the potential outcomes of the results. On one hand, I could be diagnosed with anything from Multiple Sclerosis, a brain tumor, lesions in the brain.. Anything really. Or, the alternative, which is absolutely nothing. Or as the doctor's say "Everything looks normal." Now, to some of you who have never been through a period of illness like this, I would like to state that this next sentence may sound crazy and unbelievable to you.... 


I'm almost hoping that they find something. I know how that sounds. It sounds like I'm wishing for an illness or a disease. But unless you've been in this position, I think it's probably hard to understand. The thing is, whether or not there is a disease or illness causing these symptoms; I AM HAVING THESE SYMPTOMS. I am currently living with these symptoms. Would it be so awful to know why they are happening? I'm at the point where I can comfortably say, any answer is a good answer. Even if that answer is something as scary as a tumor, or something as life-changing as MS. Either way, I will know. I will have an answer. For once.


Anyway, I've tried to take comfort in prayer the last few days and give myself some peace of mind. But it's proving to be quite difficult and I'm constantly waiting for the phone to ring. I'm leaving town for a few days today as well and I'm worried the doctor's office will call with results as soon as I'm gone. All of these things are causing anxiety and worry and it's all messing with my head. I'm glad to go away for a few days and be distracted and enjoy spending time with friends and loved ones. But that worry is and still will be there in the back of my mind. Right now though, I'm feeling so very thankful for the friends and family that are being supportive and just listening and trying to understand how I feel right now. It means so much more to me to have someone listen and try to understand rather than falsely assuring me that I'm okay or that I'll be fine and "I bet the results won't show anything." because, these things, in a situation like this, are not comforting. 


I already know that I'll be fine. I'm fine now. I've been fine for a long time. I could go through hell and back and still be fine. Because I'm used to fighting and I'm used to living in a body that attacks itself. But please, even if you're saying in the spirit of comfort and love, please do not tell me that I will be fine or that you're sure nothing is wrong. This isn't comforting and it doesn't feel like it's being said out of love. If you truly understood and took the time to know how I feel and how these things are effecting my life; you would want me to have answers. You would want me to know what is wrong; so I can work on fixing it or at least managing it. 


So as I continue to wait for results and answers; I just want to remind you all to please consider what you are saying before you say it to someone in a sensitive situation such as this. I appreciate all of the support and kind words; but sometime's the things that you say in times like these, are not comforting at all. I'm a person who likes to know how it is. I like honesty. Brutal honesty. I don't sugar coat things and I like to know what to expect. I like to be prepared and informed. I'm not scared that I may have a disease; I can live with that. I'm scared that I'll go through life without ever having an answer as to why I'm in so much pain. And maybe that seems crazy but I'd rather know what is going on than be left in the dark for the rest of my life.

Saturday, December 5, 2015

Today

Well, today is the the today. Although today feels big, I guess it isn't really. In reality, I will get no answers today. But at least I will be one step closer to possibly having an answer, or at least ruling out a few things. 


Today is the day I have my first MRI of the brain and cervical spine. If you keep up with my blog, you'll already know that I've been having symptoms that are striking my doctor as neurological. We've run every test we can think of the find another diagnois. I've had a laproscopy, colonoscopy, endoscopy, countless bloodtests to rule out other autoimmune conditions or celiac disease. Everything seems to come up negative. So far we've established Irritable Bowel Syndrome and Endosalpingiosis. Neither of which would cause the type of symptoms I am now experiencing. SO off to the MRI I go. In hopes of an answer.


I think I'm having a lot of mixed feelings about today. Many people hear that I'm having an MRI done and say "I hope they don't find anything to worry about." or "I hope you don't have MS." or something to that effect. But the thing is, it's not that I hope I have a brain condition; because obviously it's horrible and awful and painful and a lifelong challenge. But, I have been in pain since I was twelve. I've gone through phases where things weren't as bad. But I've also gone through flares where things are really bad. This past year has been bad, really bad, and then worse. And I've been left in the dark without an answer. Having this MRI is kind of my last hope that maybe we'll finally see what the problem is. But maybe we won't. And that scares me even more.


Either way, the result of this MRI is going to be a huge source of stress and emotion in my life. If I get a diagnosis; there's a whole world of issues to deal with: things to learn, new medications, treatment plans, etc. If everything seems normal: I'll be sent back to living my life in pain without an answer as to why. Which is what I've already been doing, but even more hopeless. 


I guess, over the next few days, I'll hope and pray that whatever happens, I'll be okay. I'll move forward and get stronger and feel better and be happier. Because that would be nice. 

Wednesday, December 2, 2015

A Little Something Good

So today, I experienced my own little miracle and I just feel like I 
need to share.

So, as some of you know, I've been experiencing some pretty scary 
symptoms lately that we don't have an explanation for. Thinking it 
could be neurological, my doctor referred me out to have an MRI 
of the brain and cervical spine. I was told I'd likely have to wait 
four months for the MRI. It ended up being scheduled for February 
10th. Last night, in a moment of sadness, feeling like I had hit rock 
bottom; I decided to try to pray and basically just yelled at God and 
told him that I needed him to show up because it's really been 
feeling like he's not here at all. I bawled my eyes out and just felt so 
hopeless and stressed about having to wait so long to get some 
answers. I ended up flipping through my bible a little and then 
going to bed.

This morning, I woke up and there was a leaf on my pillow. The 
same leaf that is usually tucked in my bible pages at Psalm 23 (The 
Lord is my shepherd..etc.). I thought this was maybe a coincidence 
but either way, slightly comforting. As I was heading out the door 
later, I got a call from the hospital. They were calling to confirm 
my MRI for this Saturday. I made her check and double check 
because my appointment was scheduled for February. She came 
back on after talking to the doctor and said that they decided this 
morning to take all day Saturday to do MRIs and my appointment 
was in fact, this Saturday. In three days. Not three months.

I know to some, this may seem just coincidental but to me, this is 
the moment that has started to restore my faith that God is still here 
and he still cares. I no longer have to wait three long months that 
would have been filled with stress and worry.

I want to encourage you all to remember that even in your most 
hopeless and darkest moments; God still cares. He hears you.