Sharing.

This morning as I was considering sharing a quote from the Invisible Awareness Week Facebook page, I found myself once again having an internal battle with myself about whether I should or not. I spend a vast majority of my time making it appear to everyone around me that I am not sick. And I don’t want to become “that” person who constantly is posting stuff on facebook about illness like a big sign on my forehead saying “Don’t forget I’m sick!”…but at the same time this event comes once a year, and aside from posting about my blog there aren’t many times I do post about these things. 

Social media has become this massive platform for sharing everything with the entire world. And what once was just a medium for sharing what you had for lunch today or using emoticons to share your every feeling, can now be used to spread messages – whether they be positive or negative. More and more I’m seeing pictures of children’s classrooms matched with captions from teachers begging the image to be shared so that children can see the vast impact one picture they post can have on the internet and how many people see it. What an incredible opportunity to spread a message! If I’ve been given this platform, and can raise awareness for not only my invisible illnesses, but others as well – why shouldn’t I? And if people get tired of me posting stuff 1 month out of the year, then they don’t have to read it! Granted this argument can also be said for sharing things about faith and spreading the message of God’s love on this amazing platform we’ve been given – but that’s another can of worms for another time.

Just the other day I had a conversation with a friend who is aware of my medical struggles, and she had met someone else who had an invisible illness. And she had the revelation that I wish so many other people would have – you can look completely fine on the outside, and a hot mess on the inside. So many people are fighting battles we know nothing about, and looking at them will not show you all the battle wounds they have on the inside. Nearing every other person on the planet is struggling with a chronic condition, 96% of which are invisible. This week/month are such an important time to raise awareness about it so that millions of people can finally be heard and know that there are so many of us supporting them and we believe that it’s real and not in their head (something we get told A LOT). 

So if you get tired of seeing my posts – I don’t know what to tell you other than to keep scrolling. Not only is this message something I’m passionate about, and this is the only way I know how to help; but this is also a huge growing experience for me. Posting the quotes I see that ring true in my heart, or writing about the daily struggles I try so hard to hide is extremely hard. It puts me in an incredibly vulnerable place and I’m voluntarily allowing people to see my weak spot and opening a door for them to either hit it or embrace it. And I know that God works the most in valleys and in weak spots, so this is also an opportunity for Him to be glorified through this life that He has given me, even if I don’t see the purpose or reason behind it yet. 

This week/month of intentional awareness isn’t about me. It’s about all of us. We just want to be heard and taken seriously. It’s not all our story is about, but it’s a big part that we want to share. 

What's Wrong With You?

This month is a very special month for me, because it is includes Invisible Illness Awareness Week! The official week this year is Sept 28-Oct 4, and you can find more information and cool resources at their website.

Yesterday I started reading Sick And Tired: Empathy, Encouragement and Practical Help for Those Suffering from Chronic Health Problems. As you can imagine, it's written by someone who is in the same boat so many of us are, and she herself has several chronic (and invisible) illnesses. It's SUCH a comfort to read these words that seem to come directly from my brain, but to know that someone else has the same thoughts! Instead of waiting until Invisible Illness Week, I want to blog my way through this book, and in honor of this important week, speak to some issues that we as invisible illness sufferers face, and raise awareness!

Normally when someone is sick someone can simply ask "What's wrong with you?" and the answer is rather simple - a cold, sinus infection, mono...and the conversation ends there. But if you have several illnesses, add to it they are invisible without outward symptoms, how do you explain that? Do I start from the beginning and detail 23 years of misdiagnosis, tests, almost answers, and arrive at the long disease names? I have tried that all too many times and watched as eyes glossed over, realizing they were in for way more than they bargained for. So they are confused, I'm frustrated, and nothing was solved or answered. This is most definitely something I still struggle with, particularly as I meet new people. I want to tell them so they're aware of my limitations or why I do certain things a certain way, but do they really need/want to know every detail of my journey?

So if I don't need to tell the whole story (unless someone asks - of course I'm an open book with telling the whole story if you are wanting to hear it!), and I shouldn't rattle off a list of diseases no one has heard of - what do I say? I suppose it would suffice to have a "nutshell" answer, and one that ends in a positive light so that whoever I'm speaking to doesn't resort immediately to pity or think I'm devastated (at that moment) about the life I've been given.

Take away here: When you ask someone who is chronically ill what is wrong with them, and they look around confused and don't answer right away, don't assume they are making it up or just want attention. It's because they are having the inner monologue from above, unsure of where to begin and how much to tell. Some people are just curious and want to know for their own nosy selves and will be happy with a short answer. Some people are legitimately curious and want to know about you as a person and more about what comes with hanging out with you a lot....so having a "nutshell" answer allows the nosy to be satisfied, and leaves a door open for further questions from those who are genuine.

Hi, my name is Jordan. I have several conditions that affect my muscles and nerves, and I'm in pain/exhausted every second of the day, so I have to often rest when I don't want to, so I'm going to sit down now. Would you like to join me?

Finally.

Hey people!

I have super exciting news! So, usually I am not a big fan of Nike - but they finally have done something that many companies should have done long ago! Tomorrow there will be a new shoe on the shelf called FlyEase, made especially for disabled patients!

I often have issues with my hands, and it's hard to get my legs in a comfortable position to properly tie my shoes. And when you're 25, it's a bit embarrassing to ask someone else to tie them. Not only is it hard to tie, but physically getting the shoes on and off can be a challenge! Not just for me, but for anyone suffering from motor function deficiencies, such as with Parkinson's, cerebral palsy, etc. 

With FlyEase the back of the shoe opens up similar to a door hinge, so your foot can easily slip in and out, with a zipper closure designed to be operated with a single hand. And instead of traditional laces there is a Velcro flap to keep it tight! 

This probably doesn't seem overly excited to a healthy person, who has probably not even thought twice about putting tennis shoes on before. But as someone who sometimes struggles with footwear, I am completely stoked about this!! And hopefully now other companies will follow suit and will begin making more accessible shoes as well!

Unfortunately right now there are only men's sizes, and they start at 7. So Nike is choosing to cut out a huge portion of disabled patients...but maybe in time they will be more inclusive. 

Jessica.

Even as I sit here typing, part of me doesn't really believe she's gone.

She was just here. She just finished law school. And today I get a text saying she's gone? It can't be true.

When I think of Jessica all I can think of is her smiling face. I don't think I ever saw her when she wasn't smiling. She had such a ferocity for life and was determined to make the world a better place - which I believe she did.

We were in the same sorority family, which is what brought us together. She was one of the many reasons being in the hott family was so much fun. I introduced her to peppermint bark which rocked her world, and she introduced me to the awesomeness of zebra shorts.

Heaven most certainly gained an incredible, joyful, intelligent angel today. I don't understand why God brought her home so soon, with so much earthly life to live...but there is a reason. Yes it helps to know that I will see her again because she is without a doubt dancing around and praising our God and pain-free.....but for now? It just hurts.

RD!

I suppose after a grueling 1200 hour, 6 month internship my blog deserves an update! That type of schedule doesn't leave much time for anything fun - let alone blogging! But I can now say that not only have I successfully completed my internship - but I have passed my licensure exam and am now officially a Registered Dietitian!

It's been a long, stressful road the past 6 years leading up to this moment - many of which I believed I would not make it to this point. But with the help of my family/friends, God's blessings and guidance, and a ridiculous amount of work and perseverance - I have done it!

So now for an even bigger piece of news (is there such a thing?!)....I have officially moved to the bustling metropolis of Marble Falls! Population is about 6,000 and it is one of the smallest towns I've ever been in! It's definitely going to take a lot of getting used to. New home, new town, new job! There's a new hospital here that is set to open next month and I will be the RD on staff - the only one! So that's going to be interesting. It's so beautiful here though. It's in hill country, my house is on top of a hill overlooking the lake - gorgeous!

As if I needed another reminder of God's faithfulness this whole experience has been yet another in the win column for His existence and hand in my life. He has so seamless brought me to this place and made everything transition so smoothly that there is no way I was not meant to be here. It's going to be really hard when my parents leave and I'm truly and completely on my own for the first time in my life - but I know without a doubt He has a plan for me being here and it doesn't include abandoning me now.

If you want more specifics about my new home just text me! I hope you're having a FABULOUS day and I hope to hear from you soon!

Looking Up.

Hello!

I am extremely grateful to be writing this post in a MUCH happier state of mind than my last one. But it’s those difficult days that make good ones so much more meaningful, right?

For over 15 years I have tried what seems like every medication out there to relieve various symptoms or the chronic pain – mostly to no avail. My fellow spoonies can attest that with any new medicine the side effects are generally worse than the original symptom you’re trying to fix! It’s a very emotionally draining process of getting your hopes up for a new medicine to just have it not work, or to make symptoms even worse! BUT! I can say with pleasure that for once in my life, I am now on a medication that helps!!! Not only does it help, but it has made a HUGE difference in my daily life – such an unbelievably huge answer prayer.

Though there is a small caveat – the fact that this medicine works means I get to add another chronic ailment to my list: RLS. Restless Leg Syndrome (RLS) is a very irritating condition that most people have actually heard of, that is characteristically known for a strong urge to move your legs (or arms as well, in lovely severe cases such as mine) to relieve discomfort/pain that get worse with inactivity or around bedtime. This is why it’s so hard for me to travel!! It’s such a relief to finally have an answer, but an even bigger relief to have a medicine that helps!!! I’m sleeping better than I can ever remember, and I have energy for the first time since I can remember, and the medicine is helping my nerves chill out.

While unfortunately I cannot say it’s helping with the daily pain I have, it’s made a world of difference even still. At this point I will take anything I can get! It’s really hard to describe how I feel now. Honestly, I’ve never really had much energy, so now that I have little spurts of it, I don’t know what to do with myself! Waking up every morning used to be a miserable process of forcing myself to get out of bed despite the fact that I felt like I hadn’t slept for a week. But now I wake up with enough energy to pop out of bed and greet the day – feeling like I have actually slept! Granted my new abundance of energy is probably equivalent to a healthy person’s slow day, but it’s still a dramatic improvement for me! Now my new battle is moderation! It’s so hard now that I have some energy to not go out and do a bunch of things which will lead to being burnt out!

This situation has confirmed yet again, that you are your biggest advocate!! I am SO blessed to have a doctor in town who is willing to help me try new things if it will bring some relief, and she was open to prescribing this medicine. But I had to ask for it! I was the one who had to tell her I thought I had RLS! It is strange to me that for all these years no doctors have ever mentioned it either. It may seem a small thing to have a new medicine, especially one that isn’t a miracle pill that magically takes away all pain and exhaustion….but it’s made my life, already just in the week I’ve taken it, SO much more bearable. My mom has always told me (and she’s right, as moms usually are) that my biggest advocate will always be me, and that’s true for anyone! Whether it’s medically, or in a situation with friends or work, or whatever life circumstance – it’s okay to stick up for yourself and be your own advocate, chances are it will be worth it!    

No Tears Left.

I can't believe it's been four months since my last post! As I mentioned in my last post, with the new year came my internship - potentially the most crucial part of my road to becoming a dietitian! I knew going into these hard, fast-paced 6 months that it would probably be the most physically demanding months of my life - and I was certainly right on point. Logging 50 hours a week, being on my feet much more than I'm used to, completing assignments and pretending to have a social life is quite exhausting.

I wish I could be writing this post in jubilee or extreme joy....but it is quite the opposite. But then again, that's what this blog was created for; a place for me to have catharsis for the pent up emotions and exhaustion that comes with chronic illness. But hopefully it is also a source of encouragement for others...but I'm getting ahead of myself!

My faithful readers and close friends know that I go through periods, or flares, as I so affectionately refer to them, when my pain and exhaustion reach unbearable levels. It could last a day, it could last a year - I never know. Unfortunately I'm hitting right about month three of this current flare. This time it's severely affected my legs to the extreme of several times I have literally fallen to the ground because I don't have enough strength to stand. It can be incredibly scary. At the beginning I even had to use my wheelchair in the house...I couldn't take more than a couple steps without just collapsing. Thankfully I am not at that low point anymore, and can stand for quite a few minutes at this point, but most days the pain is still past my pain tolerance (which is extremely high).

Today for some reason I just hit a breaking point. I had completed my 8-5 day, generally feeling alright, and from the time I came home to now it has just gone downhill. Tonight I have cried so much and with such intensity that I literally don't have any tears left to cry. I have texted in desperation to close friends who understand, longing for someone to tell me I wasn't as useless and broken as I felt. I don't have these moments very often - and even less often I speak about these moments....I'm not proud of them, but I've realized what a necessity they are. Life is hard. Having a competitive internship is hard. Add a couple chronic illnesses and constant unbearable, unrelenting pain and you've got yourself a sucky situation. The emotions and frustrations have to be released and unfortunately I tend to wait until the point of explosion.

These moments are part of my coping skills. They may not be the healthiest, but it's how I deal. I have these days where I just completely LOSE IT. I don't mean just a dainty little tear streaming down my face; but intense, hyperventilating sobs as I'm collapsed on the floor, crying out for relief and crying tears of anger and confusion. I have my moment to feel like a useless pile of trash with no worth to the world, trapped inside a broken body, knowing that boo-hooing about it won't change a thing. But when the tears stop - I get up. I wash my face off, usually cuddle with Brinkley, and get on with my life. I need to have those breakdown moments to release everything I hold in 24/7. I HATE letting people see I'm in pain or that I am somehow limited. I'm stubborn and don't ask to sit down when I know I'll be feeling the effects for days after. If you asked some of my acquaintances or even some of my friends they would have NO clue I live with pain or illness - and that's my goal. It is completely, mind-numbingly exhausting to pretend all the time that I'm fine when I'm not. And within the past couple years, especially in rehab, I've learned better coping skills and how to properly deal with it all...but I still have difficult days. But they don't completely stop my life like they used to - and to me that's positive progress.

I know that in these times Satan is just on the edge of his seat, waiting for me to renounce my faith and put a big middle finger in the air. He WANTS to steal the peace my faith gives me. He wants me to break down and feel broken. But I'm too stubborn to give him that satisfaction. I may be down but I'm getting back up. I have a God beside me who has truly known every kind of pain and frustration - and has remained pure. I don't have the strength to get through the day, or sometimes even through an hour or minute....but I'm with a God who gives me HIS strength that has overcome death! Even David has gone through times when he has cried until there are no more tears. 1 Sam 30:4 says "then David and the people who were with him lifted up their voices and wept until they had no more power to weep." During these moments it's the easiest thing in the world to feel alone - but I'm not! "But David strengthened himself in the Lord" which is exactly what I'm going to (attempt to) do. I may not feel it now, but I know the Lord hears my tears and he weeps with me. This life is not forever and one day there will be a day with no more tears and no more pain. One day I'm going to have a PERFECT body - what?! I eagerly await for that day, but until then I know there is a reason for my life.

I'm not writing this to be praised. I certainly am not writing it for sympathy. It's mostly for me, but I want it to be an avenue of awareness and encouragement. Paul says it perfectly in Phil 3:12-14 (taken from the Message):

I’m not saying that I have this all together, that I have it made. But I am well on my way, reaching out for Christ, who has so wondrously reached out for me. Friends, don’t get me wrong: By no means do I count myself an expert in all of this, but I’ve got my eye on the goal, where God is beckoning us onward—to Jesus. I’m off and running, and I’m not turning back. 

So that's where I am. Not at all even close to where I want to be...but my eyes are searching in that direction and I know that God will bring me through this flare and these illnesses, and this life. He has a preeeeeetty good track record - the logic lends in his favor. So I'm going to do my best to take His strength and glorify Him with this life that I sometimes see as a broken one, and I encourage you to do the same. It's okay to have breakdowns. Have a meltdown, cry until there is nothing left....but then GET UP. Press onward. God hasn't given us this life to live lying down. He's beckoning us onward. Will you go?