Do Not Disturb

In response to The Daily Post’s writing prompt: “Do Not Disturb.”

When it comes to online privacy, I abide by a very strict rule:

I absolutely  DO NOT do any online banking.

Yes, it is convenient. I know that. For me though, the convenience isn’t worth the risk of my computer being hacked or my bank’s computer being hacked and my personal financial information being compromised. I have two anti-virus programs on my computer. Norton scans weekly, while AVG scans every day warns me whenever there is a security threat.. With any sort of online presence (Facebook, Tumblr, Twitter, Instagram, etc) there is always the potential for personal information to be out there, but I do try to mitigate that risk as much as I possibly can by having my security options on the highest setting. I also am very choosy about what information I share, including what my status updates are, and what tweets I am putting out there.Like I do not put where specifically I live, and I do not put the dates I will be out of town or in the hospital out there. I do not have a foursquare account because I don’t feel like I need to tell people everywhere I am going and when I am there. I feel like that would just make me an easier target, and I am all about not making myself someone else’s target..I also engage in the practice of not giving out my SSN on the telephone. If someone is asking for that over the phone, that’s a huge red flag for me. Believe it or not, that’s not the case for some people.

It’s a Text, Text, Text, Text, World

In response to The Daily Post’s writing prompt: “It’s a Text, Text, Text, Text World.”

I am one of those people who prefers to communicate via text, email, or messenger, than face-to-face. Being in a face-to-face conversation with someone makes my social anxiety start to kick in. Now, I can send mass emails out every day to 50+ people, like I do with my prayer reminders and it doesn’t bother me, because I am not face-to-face with those people. But being in an in person conversation with someone gets me started stuttering really bad. That’s only something I do when I am anxious. It doesn’t take much for my social anxiety to kick in- just a typical family get together does it for me. I am lucky that my parents (who typically host those get togethers) understand and always have a quiet room I can escape to if I need to decompress and get myself together a bit so that I can go back out and suffer through the rest of the event. You probably think I’m kidding when I say “suffer”, but I’m not. For me it is suffering. I would rather have a root canal than go to a gathering of people.

That being said, in a written way, I have found that I have to be very deliberate about what I say, so that I can convey the correct emotions, and my intent with what I am saying. I can’t say something like, “God, I’m so angry I could kill them in their sleep”, and expect the person I am sending that written message to, to understand that I am not serious about that. I also have learned to be very clear in my meaning of things because, the person I am sending it to may understand that I am just joking or speaking out of frustration (an understand just what a sarcastic asshole I am), but anyone who happens to look through that person’s phone, on their Facebook wall, or their DM’s on Twitter, may not have the same understanding of what I am saying that the person I sent the message to does. When someone doesn’t understand the intent of the written message, whether it is be because they don’t know me or they take everything as literal, that is when problems can occur. So I always make sure to say that I am just joking, or that I would never actually do that and am just venting from frustration.

No-Bake Energy Sticks

I’m always interested in new snacks, and this looks like a wonderful snack that I really want to try.

Maggie May's

I’ve noticed that we have become a little reliant on granola and other fruit bars for our kids when we are out and about. They are easy and convenient but I know they are full of sugar and really have no nutrients.

I decided to try these no-bake energy bites and see how they went over at our house.

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You can swap out any ingredients you like, but here is what I used.

1 cup oats
3/4 cup almond butter
1/2 cup honey
1/2 cup raisins
1/4 cup chia seeds
1/4 cup ground flax seeds
1/3 cup shredded coconut

When you look at the list this way, you realize how great these things are:

1 cup soluable fiber, dietary fiber, and protein (oats)
3/4 cup vitamin E, fiber, and protein (almond butter)
1/2 cup natural sweetener (honey)
1/2 cup antioxidants (raisins)
1/4 cup fiber, omega-3 essential fatty acids, protein, and…

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Daily Prompt: Progress

When you look back at your blog on January 2, 2015, what would you like to see?

Photographers, artists, poets: show us PROGRESS.

When I look back at this blog on January 2, 2015, I want to see that I have moved forward in my life.I do not have a bad life by any means, but I still crave to move forward on some level. The biggest way that I want to see progress is in continuing to have stable health. I have learned over the past 32 years living with Spina Bifida that the status of my health can do a 180° turn at the drop of a hat. The most recent example of this happened at the end of October. I went to see a movie with my parents (we saw Capt. Phillips) and we ate dinner in the food court. I returned back home not feeling very well. I was having a lot of pain in my sternum, which happens from time to time, but I figured that if I would lay down and sleep for a while it would go away. Instead I had thrown up three times in less than three hours; which was followed a couple hours later with explosive diarrhea. I have a colostomy so that made a huge mess. By 10 o’clock the following morning I was rushed to the emergency room via ambulance. I ended up staying in the hospital for four or five days. I was diagnosed with a urinary tract infection, C diff, and costochondritis.

From the standpoint of living standards I would like to be living in a different apartment. I am thankful that God has given me the means to live where I do and do so independently, but the building I currently live in is beginning to be a bit of a dump. There are cracks in the walls, the water pipes leak all the time and the water is turned off about every 10 days to fix a leak, there is an infestation of German cockroaches as well as bedbugs. Not to mention that the neighborhood I live in is getting more dangerous as they gang activity becomes more prominent.

Professionally (I use that word loosely) I would like to look back on 2014, and see that I have finished the first draft for my novel ‘The Miner Prince’. I do some freelance writing and editing work now, but I would really like to do more this year. 

When you look back on 2014, 365 days from now, what is it you would like to see that you have accomplished? 

 

 

Daily Prompt: My Precious

Who is the person in your life who can do no wrong? Describe this person and tell us why you hold them in such high esteem.

Photographers, artists, poets: show us PRECIOUS.

There are so many people in my life who are precious to me. My cat is precious to me. Some people have real, human babies;  I have a furbaby. She is my child. Among my family, friends, and furbaby;  I don’t hold any of them in such high esteem that they can do no wrong. Holding a single person in such high regard, is to idolize that person.

Exodus 20: 1-6 (NASB) reads: 

1 Then God spoke all these words, saying,

2 “I am the Lord your God, who brought you out of the land of Egypt, out of the house of slavery.

3 “You shall have no other gods before Me.

4 “You shall not make for yourself an idol, or any likeness of what is in heaven above or on the earth beneath or in the water under the earth. 

5 You shall not worship them or serve them; for I, the Lord your God, am a jealous God, visiting the iniquity of the fathers on the children, on the third and the fourth generations of those who hate Me, 

6 but showing loving kindness to thousands, to those who love Me and keep My commandments.

The Lord my God is the only person in my life whom I hold to such high esteem that He can do no wrong. Unlike people, God is infallible. He is perfect. Nothing God does is wrong, because he is a  righteous and just God. He has brought me through every challenge I have faced since my birth in 1981. Some may say that God made a mistake when I was born with Spina Bifida. I disagree. God has a reason for why I was born with my disability. God has a purpose for my life. To do God’s will for my life, is my desire in this life. I want to do everything he means for me to do, and experience everything he means for me to experience in the span of time he has set aside for me to be on this Earth. My greatest wish is to fulfill His plan fr me in this life, to the best of my ability. I cannot live my life the way he intends for me to live on my own though. I need his guidance, love, discipline, and forgiveness; if I am ever going to be able to carry out His will for my life.

My God says that I am not to have any other gods before Him. My God says that I am not to have or worship any idols. He is a jealous God, and I am to worship only Him.  So, so answer the daily prompt as wholly as possibly; my God is the one in my life who can do no wrong.

 

Things Have Been a Little Out of My Control This Month…

I’ve not posted in a good bit, but I am feeling well enough again to explain to you all why I haven’t been here. The short story, is that I’ve been in the hospital. I ended up with an infection called Urosepsis.That is a life threatening situation. I am so thankful that my caregiver is as attentive as she is. She realized that something was wrong with me, after talking to my mom about a message I’d left on her phone really early that morning. My parents came over to see how bad I was when my caregiver told them I needed to go tot he hospital. I ended up being transported by ambulance.

I don’t remember a whole lot about the specific events of that morning, but I did end up in the emergency room. I remember that the doctor I got stuck with (the one who was on call when I was wheeled in), was a bit……out of touch with what was going on. At times I felt like he didn’t really understand what has happening with me. I was down there from 10-ish in the morning until midnight. I was sick enough not to remember things very clearly or at all, so the time frame may be a bit off. Once I got some fluids, antibiotics, and pain meds in me- I was better able to keep up with the happenings around me. i was also told that I have a condition called Costochondritis too.  I’ve had those symptoms for awhile, but not a name to put with them. Now I do. That doesn’t make it less painful for me, and the Aspercreme the ER doc recommended for it is an absolute joke.

I just wanted to let anyone who is interested and reading this that i am home and resting comfortably. I’m still on antibiotics, but those will be finished early next week. My spirits remain good, and I just feel really lucky. I had Kenya there and she saved my life. Of that I am sure, and I could never thank her enough for just the simple act of checking on me more thoroughly when something seemed off. She is a true woman of God and that is why I love her like a sister. After all, she is my sister in Christ. And for that, I am most thankful.

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This is the greeting I got from my furbaby when I arrived home  This is why I love her. And this is why she’s named Sunshine. No matter how crappy I feel, or what I am going through, she brings sunshine into my life.

Until next time,

Erin

NaNoWriMo 2013: Want to Write a Novel?

I’ve always wanted to do this and this is the year I am going to do it!

The WordPress.com Blog

It’s just a few days until November, and you know what that means: National Novel Writing Month, better known ’round these parts as NaNoWriMo, is near.

Have you always wanted to write a novel?

We know some of you have been waiting all year for this month! For those of you who are new to this project, here’s the gist:

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One Downside (of Many) to Being Disabled

Depending on the disability you have, how it affects you, and your current health status; there can be numerous downsides to it. For me, I can’t really get around too well, and traveling is extremely difficult. I am wheelchair bound as a result of having Spina Bifida at the T-12 level. I wasn’t in a wheelchair until I was sixteen years old, when I had surgery for a tethered spinal cord. It’s a very long, traumatic story, but the point of it is that I cannot walk any longer as a result of complications with the surgery and my spinal cord being tethered again. Que sera sera. 

Along with being confined to a wheelchair, I have also been diagnosed with Rheumatoid Arthritis.  I know y’all have seen all those new, innovative, injectible, extremely immune system suppressing treatments for RA  being advertised on television , the internet, and in magazines. Well, I can’t take those because my immune system is already so suppressed from my disability, being on so many antibiotics over the past 25+ years, and having many surgeries in my lifetime. Those cutting edge, new treatments could suppress my already suppressed immune system so much that I could contract an otherwise treatable infection that would most certainly be fatal for me. So, I am limited to the more old fashioned treatments of DMARDs (disease-modifying antirheumatic drugs)  and steroids, like Prednisone and Cortisone shots directly into the joint (if you’re thinking ‘ouch’…you are correct; those hurt). While all of that isn’t the most effective in treating my RA symptoms, it is the best my Rheumatologist can do under the circumstances. I am just incredibly thankful to God that she is my doctor and that the medications I am able to take are available to me. 

I just want to switch gears for a second and say something about my reference to God in the above paragraph. I am a Christian. I believe in God. I believe that Jesus Christ died for my sins. I believe that without the love of God, I would not have the kind of medical care that I do. I believe that without God, the types of treatments and medications that I can utilize for my ailments might not be available to me. Without God, I believe that I may not have the incredible family and friends that I have, or the amazing caregivers I do, that allow me to live independently with my cat.

If you do not believe the same things that I do, that is your right. No one is forcing you to read this blog, so you can stop at any time. However, if you do not believe the same things that I do and choose to continue reading this blog, bashing my religion, personal beliefs, or God in general, will not be tolerated. If you have a legitimate question about my religion, personal beliefs, or God, feel free to ask away. I am always happy to answer any questions you have, to the best of my ability. The same also goes for questions about my disability or autoimmune disorder. Now that I have covered that, back to the original point of this post. 

One of the surgeries I had two or three years ago, involved removing my left hip.  A few months before the surgery, I developed a sore (as I am prone to do). My plastic surgeon performed an operation to close the sore, and after a few weeks in the hospital and in rehabilitation (I’ve never understood why they like to put me in rehab after these kinds of surgeries. It’s not like I can actively do therapy being on bed rest while the wound heals or anything) I was sent home for more bed rest. While being on bedrest at home, the surgical wound opened up (as typically happens with me) and the sore got worse than before, as it tunneled up in to my left hip. This caused me extreme pain in my hip, which is really saying something because I am a paraplegic from the waist down. You know the pain scale doctors and nurses ask you to rate pain on with 1 being the least and 10 being the worst pain you ever felt? Well my pain hovered somewhere around a 9 or 10. 

As a result I was put in the hospital earlier than had been planned. The surgery to close the sore again and remove my left hip happened a week earlier than was scheduled because I was in so much pain, and I was already admitted to the hospital. My hip hurt so badly because not only had the sore tunneled up into my hip, but it was also infected. So my orthopedic surgeon removed my hip socket. There wasn’t much joint ball left since my hip came out of the socket when I was nine years old, and by the time that was discovered, the ball and socket of my hip began to disintegrate, so the surgeon put my hip back in the socket using a metal plate and five screws. Unfortunately, when this sore and infection happened, the plate and screw were just surfaces that the bacteria could grow on. Since I am in a wheelchair, but spend much of my time in bed due to severe pain, there is no reason that I need a hip socket and joint. So I don’t have a left hip anymore.

While that took care of the hip pain, and helped take care of the infection, it created it’s own set of difficulties. Mainly that I am at a greater risk of breaking my femur if I were to fall while transferring, or fell out of my wheelchair.  The fact that the medications I am on are causing me to gain weight doesn’t help anything either, but there’s really not much I can do about that.  Besides, I would much rather be fat but have my symptoms controlled as well as possible than be skinny but miserable.  There are some people in my life who don’t understand that, and hint about me losing weight or “just wanting me to get weighed for a baseline” (which is complete bull btw); but none of those people are a doctor. Those people are actually one person, my supported living coach, and as a general rule I ignore her when she starts going on about things like that and me needing to get weighed “just to have a baseline.” A baseline weight would do nothing to help or hinder me in the slightest. There is also the fact that I have heard from my caregiver that she wants to get a weight on me to see if my medications are causing me to gain weight. I have absolutely no reason to think that my caregiver is lying to me about that either. If that is the reason, I would much rather have my supported living coach say so than to come up with something like a baseline weight. The reason that a baseline weight would not be helpful for treating me is because the only time I need to be weighed is when I have surgery or am admitted to the hospital. Anytime I am admitted to the hospital or have surgery, I am weighed either on a wheelchair scale or by the bed I am on.  That is neither here nor there though. 

As we’re approaching the holidays, I am reminded of one of the hardest parts about being largely homebound with no vehicle that can take me to where holiday festivities are at- my parents’ house. Not being able to be as directly involved in even he smallest things is difficult. In October it’s my nieces and nephews decorating pumpkins at Mom and Dad’s house. I used to be able to transfer (before my surgery to remove that hip) and be in my wheelchair long enough to go to these sorts of events, but not this year. If it wasn’t for Facebook, I never would have even known that was happening today, since no one even mentioned it. It may have been because I would not have been able to go over there, but there is something about seeing pictures on Facebook and learning about some event after the fact, that makes me feel even more isolated than I already am. I know it sounds silly, but even being told about family things that I cannot attend before they happen makes me feel more apart of those things and less isolated. Most people, I know  won’t understand that because they can get out and do things. They get invites to things because they can actually decide whether they can attend or not. Me though…I can’t attend whether I want to or not, so whatever event it is, isn’t even mentioned to me.  Now I’m told that I will be able to come over for Thanksgiving and Christmas…providing that suitable transportation can be found for me.

That’s enough of me mourning things that I have no control over. I trust that God has some plan for me, and that I won’t be left out of family gatherings forever . I was able to do something fun today though. It’s a well known fact that one of my favorite past times is to watch sports. it is currently college football season, and I rather enjoyed watching  FSU beat NCState 49-17.  Right now, Ohio St is playing Penn St and is leading 14-0.  I’m not nearly as invested in this game as I was the previous one. I’m only keeping up with the cliff notes version online, as a matter of fact. Really, I’m watching some movie about the sinking of Battleship Bismarck. It’s a decent movie so far. I’m at the part where the Hood has been sunk and Bismarck is steaming for Nazi occupied France to be repaired. The planes they use in the movie are the same ones that, as I’ve seen in documentaries about this massive battleship. The Swordfish Biplanes make me giggle though- they look like shooting at them with a peashooter could tear them apart!  And the Catalina Flying Boats…I have never seen anything like them! 

I have written myself out here and am going to go back to watching my movie now. 

Until next time,

Erin