Tuesday, April 29, 2014

Changes

I've been thinking about something for a while, but after yesterday's post I feel I need to do more than think about it now.

The whole reason I am where I am, in a good sense, is because of God. He's my strength. He's my everything. But at one point I did what I say myself we shouldn't do... I compartmentalized God. I started a second blog. I said the purpose was to spread God's love, my Christian blog. But by doing so, what did I also do? I nearly removed God from this one.

I know a lot of people are not Christians/believers, but should I have to remove God- the maker of all things and beings, because some people don't agree? No. I do not have to answer to those other people, I have to answer to God. God is first in my life, God is center of my life. So God shall be everywhere I am and in everything I do, and that includes this blog. If you don't like that, no one is forcing you to read it, but let me challenge you... read it anyways. And then decide for yourself. Does God exist? If not, why do you think that? If so, why isn't He center of your life also?

I know God exists. I know God exists because I feel Him with me so very often. And even when I feel far away from Him I know He's still here hoping I stay close to Him. I had an experience in which I felt the Holy Spirit enter me and speak through me. I've been a changed person ever since, a better person, a person who is so weak but who has a very strong God to get me through it. God is good.

So anyways, that's my explanation for future posts you might see. But it also leads me to this... I've thought more so about all that I'm doing... meaning writing, blogging, designing, promoting awareness, hoping to eventually publish a book, so on and so forth. I really don't know what to do. Should I close down my other blog and keep everything in this one? Should I start a whole new one completely? Should I get my own website and develop this all into more than "just a blog"? What should the name be? Should I use my legal name or a pen name? Should I have a main focus or let it go where it goes? So many questions and so far I have no answers.

If you have any suggestions or opinions, I'd love to hear them. I can't promise I will follow what you say, but I will listen with an open mind. I know when I post my blogs to facebook, many people comment, but I would love if you all started leaving comments directly on here. It would be nice to have more discussion rather than lecture type of stuff. Ultimately, what I want is for God's will... in every aspect of my life. So if you will, please join me in prayer for that... that God guides me through this walk called life... with my health, with personal situations, with my writing, with everything.... that God leads me to the right people at the right time and provides the right words and actions to make whatever His will is happen.

Be blessed. God is with you.

Monday, April 28, 2014

1 year ago today

Today is a great day.
Today is a year from the last day I was in the hospital! An entire year!! Yes I had one trip to the ER and multiple declines in health with some concern of the need for a hospital, but never admitted. That's a huge change from the 14 months prior to that when I had spent more than 3 of those months in hospitals.

I'm not improved, I'm the same. Chronic conditions don't typically "improve." It is what it is. But my not being admitted into the hospital tells me something. It tells me I've better learned how to live with this, how to manage it... when to do something, when to rest, how to "treat" the symptoms that come on. And it furthermore tells me, God's got this! It's in His hands and that's the best place for me to be.

Today I wanted to celebrate. I had a free ticket to a movie for my birthday and I rarely go to the movies anymore... 1. It's too expensive. 2. I stay away from crowds so I don't get sick. 3. When you only have so much energy, using it to go to a movie is not high on the priority list. But today I went to a movie. I wasn't going to see this one because I heard it was horrible. But I am SO glad I decided to go and SO glad I chose the movie I did.

God's NOT dead!!! It was excellent. I highly recommend it to EVERYONE. It was the perfect movie for me to see today to remember how present God is in my life every single moment of every single day. Philippians 4:13 I can do all things through Christ who strengthens me. And boy has He ever been my strength! Praise Jesus!

You know what, I'm going to thank God right now... thank Him for all that I've been through. My struggles are actually a huge blessing. My struggles have opened my eyes to see, to believe, to have faith. My struggles have brought me closer to Him. My struggles have given me something to look back on and see how high of a mountain I climbed, and I made it. I made it with Him! No other person but Jesus Christ Himself! If I wasn't left to do it "on my own" I would have never realized it was God doing it all, I would have never thought twice to glorify HIM! Praise Jesus!

That's about all I need to say for now. God bless you all. Accept Christ as your Lord and Savior. You never know the day He will come.


Wednesday, April 23, 2014

Break free

Disclaimer- do not use anything here as medical advise, but solely an opinion. Do your own research and talk to your doctor... maybe a functional medicine or holistic one...

Medicine has it's place in society, but it should be merely that, a place... a place you seek when you absolutely need it, when the natural way won't work. Not a place that you spend your every day and every dollar. Realize this before you become chronically sick like I did...

Do you ever feel like you don't belong within the society in which you live? As if you are an outsider looking in on a bubble everyone is trapped within? Like you are among only a few outside that bubble that can see clearly what's happening within?

Probably not... but I hope one day you can be.

I broke free. I broke free in different regards. God saved me, that's the ultimate freedom. Other things here and there. But then with my health... I broke free...

Back in 2010 when it all first started, I trusted every doctor's office I walked into. I was naive believing they all knew what they were doing, that medicine really did fix every problem, that this illness would go away because no one ever gets chronically sick until their 80's... I did this for a few years. I was doing my own research along the way after the first few months of not being healed... but it was research that paralleled the medical industry/pharmaceutical industry research. I wasn't thinking outside the box... and once I did, the doctors placed me on that list.

It's the list that those in the bubble don't believe exists. The list none of us ever see. But it's out there. They no longer like you. Why? Because you broke free. You figured out what they are doing to you... and it's not centered on healing. And you, you are now a risk to them... a risk to all that money making, because you now know what it's about and you no longer support it.

It's centered on money. The ultimate dollar. The root of all evil. If it makes them money, they don't care if you are healed. They don't care if you are suffering. They don't care if your side effects are greater than your initial problem. They don't care about you. They see you as a dollar sign. "They" are the ones that run it all... "they" are some of the doctors and those in the industry lower down who realize this. There are still some that probably don't realize it but they still are a part of "they" because they follow the rules, the guidelines, the processes, the red tape, the bogus nonsense and feeding you pills and fake garbage instead of food. They are taught what's in the books and they believe and follow those books verbatim.

I've recently heard multiple times that when you reach a certain age you are fully set in your beliefs and ways. I don't know if it truly is age or something else. What I do know is the majority of people only open their ears to this: what the media says, what the people in charge say, what the doctors say. Guess what? They all have it in together, together for the money. So why would you believe them? Because that's what you have grown to know as true your whole life.

Break free. Don't believe everything you hear. Do you own research. Be your own brain, not someone else's. Consider the source, and the source of that source, trace it back. What does it lead to?

I'm not well, I'm not healed, because the damage has been done. I was poisoned with way too many medications I did not need, misdiagnosed repeatedly, and not tested for the things I should be tested for. But I'm doing everything in my power to try to make the most of the life I'm living and better it... from vitamins to supplements to staying away from the doctors unless absolutely positively necessary. I'm outside the bubble and there aren't that many there with me. Some may call it conspiracy theory, but I think the real conspiracy is the one the majority of society is believing.

When doctor's won't give their spouses and kids the medication, food and treatment they give you... what does that say about it? What does that say about them? And what does that say about your future?

Break free.

Tuesday, April 22, 2014

off the top of my head

I haven't written in a while... not feeling well, busy, not feeling well, busy... anyways. This is going to be random off the top of my head what's on my head to get something out there and bring me back into writers mode.

I was really sick on Easter. Days leading up to it I had a sore throat then a fever. Then on Easter very early morning while I should still be sleeping I woke up with horrible nausea and stomach pain. It lasted all day and into yesterday. It's better today as long as I stay laying down. If I get up, it's back. I don't know if I got food poisoning, caught the flu or something else. Maybe it's "just" POTS. Yes, POTS can do stuff like this. Some people can barely eat because of POTS. The odd thing is after 2 days of barely eating because I can't, I gained a few pounds. Weird, but ok.

Overnight I woke up countless times because my entire body went tingly. You know how it happens to your leg or arm when it falls asleep? Well it kept happening... to my entire body. The only way I've been able to make that go away is by standing or moving around. But then, back to the nausea... and add the weakness.

With chronic illness you just can't win. It's always something. And when it's not that, it's still.. something. You NEVER feel good. Sometimes you say you feel good, but "good" isn't good, it's "I'm getting by" or "I'm doing better than yesterday when I couldn't even get out of bed." Our outsides don't show what our insides know. It's a constant struggle every second of every day, one we have to face physically alone... because no one else can step inside our body and do this for us.

But it affects everyone around us. It affects relationships, social life, having a career, having a family, everything. It affects everyone and every thing. Healthy people can get over the flu and move on with their life. Healthy people can wake up and go out on a moments notice. Healthy people can live however they choose to live even if they aren't choosing to do so right now. We with chronic illness, well, we really can't. It's really hard. And it's harder when those you love leave you and make you do it alone, more alone. It really shows you who people really are. Their true colors. How strong they are when things get tough... and they... run.

Like flowers in a garden... the ones that look beautiful when the sun is shining, they wilt over and die when the storms come. But then there are those that stay strong through the storm and after that it makes you realize how beautiful they really are. People are like this. Some appear to have a kind heart but they run at first opportunity. Others maybe you barely notice, but when times get tough they are right there with you every step of the way and you see how beautiful their heart is.

So we with chronic illness. We've already succeeded. We are successful. We are strong. We are tough. We have done it and are doing it and will continue to do it. We have each other, we have those who care and stand by us, and we have ourselves.

And most importantly, hopefully a number of us also have God. Because no matter who gets in the way or what gets in the way, God wins every time. Hold on to that. Hold on to Him.

No one and no thing can keep me down, because I belong to Him. I'm a citizen of Heaven passing through earth. Remember that as you walk through your daily struggles. This too shall pass. He is our strength. God is good. Happy belated Easter, since I was very sick on the actual day. But as I kept telling myself then, and now, my suffering is nothing compared to His. So if He wants to show His strength through me, through my weakness, let it be!

Sunday, April 13, 2014

Sad

Everyone else is making plans and you are sitting back and watching... when you used to be the planner.

Plans to go to a special occasion in another state, approximately 5.5 hours away. Hop in a car, enjoy the ride. For them, sure. For me, not so much.

Anything over 2 hours I have to take shots because of my blood clot risk factor. Breaking it into more nights still leaves a drive longer than 2 hours and an additional expense of a hotel.

Take the train so I could walk around and not need shots? Leaves at 7:30am. My body won't even function til after 10, 11 sometimes. And the train is an hour drive away, so two hours just to get me to the train and back. And the added cost of a train ride on top of the gas of those who are driving.

Even if I take the shots...

I use a wheel chair if there is lots of walking. Put that in a tiny car and there's next to no room left.
And add extra needed space for my legs because of the blood pooling. My legs have to stay up. I need a whole back seat to myself for a longer ride.

My back also needs to be supported if it's longer. Or my muscles go weak and it will affect my diaphragm.

And all my dietary needs/restrictions. No I can't just let it go for a few days. I need coconut water every day. I drink regular water more than anyone I know. No fast food, how does that work while on the road? And not just foods. I need to eat and do things at certain times. Not because I "want" to... because if I don't my body gets thrown off so easily and I can't function. Routine is important. Routine is necessary.

Leave Friday, occasion on Saturday, return Sunday. Where is my rest day? It doesn't exist.

Oh but wait someone I would really like to see from out of town will be here at that same time which means plans immediately before or after all this as well. Not sure how that's possible.

And that's not even the end. I apparently have to travel 1000 miles away immediately after that.

How is this all going to happen?

It's probably not. I'm too complicated, and regardless of what anyone says, the fact is I am an added burden. I require accommodations, accommodations that sometimes aren't possible and sometimes aren't worth it because by the time it's completed I'll have absolutely nothing left in me to enjoy what I was even going there for.

Solution? First of all not having to be 1000 miles away on short notice, that would superbly help. That's probably the biggest factor in this. I just can't be go go go for that long straight. Not take that out of the picture hypothetically. Solution? Drive down 2 days there with a bigger vehicle accommodating to all those things, have 2-3 days in town, and drive down 2 days back. Which turns it into a 6-7 day trip instead of a 3 day trip, but then I could do it. Though I still can't because it comes back to the need to be 1000 miles away during that time.

I'm not complaining. I'm stating the facts. The facts of life... with chronic illness. Sometimes the hardest part is realizing how much it affects everyone else... and sometimes you just don't want to put them through that. But even if you don't want to put them through it, you hope they always want to be by your side. I'm glad for those who are.

Saturday, April 5, 2014

29 years and...

29 years and 364 days.

I've been making a pretty big deal over my 30th coming up, and honestly, whether you think that's a good idea or a bad idea, you agree or disagree... this time, it doesn't matter to me. I've been making a pretty big deal over my 30th coming up because of this...

Every day of my life is a struggle, a battle within my body. Some days I can barely walk, some days my breathing feels like an elephant on my chest, some days I rarely talk at all because my jaw is so weak, and some days it does get to me and I'm sad about this new life I'm living. On top of my health I was handed something I never wanted to receive and yet I have no choice but to deal with it. We can't control some circumstances, but we can control our attitude about it.

So leading up to my 30th, I wanted to focus on me, as much as possible... not in a narcissistic sense, but in finding the little joys in life. So I had the idea of "30 days til 30". For the month leading up to my birthday, I decided each day I would do something that made me smile, made me happy, was fun. I really had no rules or goals for this other than keeping it as low cost as possible. It was in absolutely no way an all day thing, just one simple thing a day... a couple minutes really.

I started out with so many ideas in mind... I wanted to go horseback riding, fly a helicopter, get a make-over, have a photo shoot, test drive an expensive car, so on and so forth. But that's more of a bucket list than a 30 days til 30 list, and my body wouldn't be able to handle all that, so I didn't do any of those.

What I did do is this... I found the simple joys in life again. I remembered that happiness comes from within and isn't dependent upon any other person or thing. I smiled and laughed at the little things. I felt my heart blessed in ways I wouldn't even imagine... and it wasn't always from the one little thing I did per day... it was from the ongoing transformation within me making me notice every joy a little bit more. I remembered to cherish all those "little things" we typically overlook.

In all 30 days the total cost was $6. $6!! Granted, I did use a couple gift cards, and my mom lent me $1 lol... but still even if you include all that the total was only about $20. Money doesn't put a smile on your face, your attitude and heart does.

So what did I do in the literal sense? Little things that you might not even consider as anything special... things you might laugh at, things that might be common for healthy people. Some of what I did was this-

  • built a 6 inch snowman
  • took a nap
  • drew a picture
  • built with legos, yeah that's right!
  • watched the sun rise
  • wrote poems
  • taught myself piano on my old keyboard
  • lit a candle, put in my ear buds and relaxed, actually relaxed

When your physical strength gets used up quickly, you really have to get creative. There were some days I could barely get out of bed, but somehow I came up with something to do right there laying down. A lack of physical ability doesn't mean you can't still enjoy the little joys of life... honestly I enjoy them moreso now than I did pre-MG/POTS.

Tomorrow isn't just closing out another year, it's closing out a decade... it's putting the past behind me and leaving it there, moving forward with a positive attitude, some amazing family and friends by my side, and knowing God's got this.

So yeah, I'm making a big deal over 30... because I'm ready to rock this!