Moving to Survive

After the move, I am trying to get resettled, and back into our normal routine of life. I could make a full elaborate post about this move, but honestly, I could write about it for hours. We are just so thankful it is over.

I want to thank dear friends’ that took the time to help us, and kept us in prayer for the course of the month or more. It has been a trying year to say, nonetheless; however, I am reminded that my life could be a lot worse.

Let’s just say, when we made it to Southern Utah, my husband’s work status was terminated, and we received a partial paycheck. We did not know anything about it until after we arrived with all our possessions in a u-haul truck (260 miles from our last residency.) We had a moment of no job, or a place to call our own. It was a similar instance to what happened to us back in 2010 when we moved from Arizona. Although we have been frustrated to tears, we prayed and prayed without ceasing. I was angry, but I wasn’t hostile like I was nearly 4 years ago (James 1:19). I was more angered toward myself because I wish I could be a financial help in our marriage. My husband never makes me feel like burden nor does he ever imply he wished I could work. I beat myself up for something I cannot help. But, that is why there is God I need to readily rely on, everyday. I might not be able to bring in the means to support us with money, but as long as we have joy. Even if one day, God forbid, we did lose everything—we will always find joy in Him. Even though this life can be exhausting just surviving due to limitations, God’s miraculous blessings are never limited, and that is something I, myself, have to remember.

We trusted in Him. He sent us angels in disguise. He worked miracles within 3 days. My husband’s work was reinstated. We have a roof over our heads.

Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. If you are insulted because of the name of Christ, you are blessed, for the Spirit of glory and of God rests on you. However, if you suffer as a Christian, do not be ashamed, but praise God that you bear that name. -1 Peter 4:12-14 & 16

Infectious Diseases

Who would have thunk iron is such an important part of thriving? I finally had my iron infusion a few weeks ago. I was very nervous because my last experience wasn’t so pleasant.

Nervous.

That is a long story in itself, but basically, the nurse nor doctor warned me of the side effects, and tried to brush it off with, “I’ve never heard of anyone reacting to iron infusions before.” Granted, you could go your whole career without seeing something, but don’t make it sound impossible. And honestly, you hadn’t seen Epidermolysis Bullosa, either, but I am sitting right in front of you. It can certainly be shocking to witness something rare, but it is important, in the medical field especially, you are bound to see anything. Textbooks does not equal personal experience. Your profession as a nurse or doctor is to make your patient feel as comfortable as possible, and listen to their body.

But in the end, God showed me He would prevail. After recovering from that experience last year, I had a good year after the iron settled into my system. It has been over a year since dealing with that particular iron infusion center. After recent of events of skin infections and overall feeling like someone sucked 500 pints of blood from me everyday, my doctor could tell from my migraines and bodily pains I was most likely anemic, again. I have had other doctor checkup in-between (different doctor), but they did not see the dire need for me to have an infusion–as I had mentioned in my last post.

On the day of meeting my new Hematologist, the PICC team installed a midline in my arm, for a whole week. I have received this team before, and they are a blessing for my life, really. She has a wonderful way conversing with me, just as if she wasn’t ripping a hole in my arm while blood is going everywhere. We often talk about travels and nature. I greatly appreciate the distraction. After we were done, she rubbed my arm with a sterile towel, around the midline hole. Little did I know, the skin rubbed the clear off, again, right next to the midline’s entrance. She immediately panicked, and assured us she didn’t use anything sticky. I assured her it wasn’t her fault because it was inevitable. Realistically, I should have had a whole new midline put in somewhere else, free from breakdown, but it was a risk we all decided upon because my arms are limited.

After my Hematologist set up everything, Medicaid decided not to approve my iron infusion because they no longer contract with that hospital. Immediately, I was feeling a bit flustered because I have been dealing with recent struggles with receiving all my wound care needs (another story in itself). The nurse had to set up an iron infusion at another hospital, which I deal with on a regular basis, thankfully.

The next few days, my “stable” skin was becoming extremely red, and the midline site was getting red and puffed up. It was terrifying because it looked like 2010 again when I almost died from sepsis. My husband phoned the 24-hour home care nurse hotline at the hospital since they had been caring for my midline. She returned my call within 2 minutes, and told me she would probably need to pull my midline because it sounded like infection was heading for the worse. I was praying, but I was frustrated to tears and overwhelmed because that meant having to redo my midline, reschedule appointments for my infusions, and treat possible blood infection.

The nurse phoned me back about 45 minutes later because the on-call doctor was MIA, but they advised I needed to go to the ER immediately. There was no hesitation, and we headed off to the hospital. The ER nurse got me in immediately after realizing my signs were all septic except I had no fever, but intense chills. I had a small meltdown before the doctor came in to examine me. Many emotions were going through me. My first thought was my husband. On top of that, I was beyond fatigued with pain. My feet were red-hot and “tight” in feel and appearance, the pain was excruciating, but I wanted nothing to do with morphine, but kindly accepted Lortab. The doctor did his examination, ordering a skin culture, labs, blood culture, and Vancomycin (very strong antibiotics used against very deadly infections). I have a rare side effect with Vancomycin called red man syndrome. If it is administered too quickly, it literally feels like ants are eating me alive, followed by my skin turning different shades of the deepest reds with the fiery feel of molten rock sitting 2 inches from my face/neck.

Before the nurse could give me the Vancomycin through my midline over 4 hours, she had to give me Benadryl. I explained to her, I had to have a smaller dose of Benadryl because it gives me panic attacks. We decided to would be best to administer it through my midline to work instantly against possible allergic reactions. She put it in the midline fairly slow. Firstly, my arms tingled then it went straight to my brain: instantaneous high feeling = panic attack. I freaked out. It was like the waves of ocean waters rushing over me, and every level of fear rushing through your body, on top of your brain telling you cannot breath. My husband said, “Colors,” which is a brilliant method to help panic attacks. Counting 5 objects of the same color (thank you, to a dear friend, for this wonderful recommendation) to get the brain focused. After what felt like hours, I apologized to the nurse because I was embarrassed, very embarrassed.

She said, “Don’t apologize. I should have pushed it a lot slower. To think, people often love that feeling after I give them Benadryl.”

“Not me,” I cried.

The nurse hooked up my little bag of Vancomycin around 2am. Within 10 minutes, my skin’s inflammation was already subsiding, and my heart rate went from 130 BPM to 85 BPM. The doctor came in to tell me my blood results, and he said miraculously no infection in my blood, but definitely the start of cellulitis of my skin. I was so relieved. I still had to stay in the ER until my bag was complete, and we needed to get some sleep. My nurse checked in on me every 45 minutes to make sure we were as comfortable as possible. I have to say, I am beyond blessed to come across people who care. God comforted me through those people. I also read verses that morning in the ER on comfort because I could not sleep.

weeping may stay for the night,
but rejoicing comes in the morning.

I fell right to sleep.

6am came around, the doctor decided to discharge me, and gave me proper instructions to follow-up with my primary physician for further medication. As God promised, I was rejoicing that morning. Even in the midst of the tears and pain, only such Love could make me smile through it all.

To be continued… (the actual iron infusion process)

Lunadog

Luna loves baking herself.

Luna loves baking herself.

Life As We Know It

Well, the time has come, our lease is up once again. We have lived in one place for a full two years. It doesn’t seem like we have lived in this apartment that long. We have had a very pleasing experience living here; the management, maintenance, neighbors, etc. have been very considerate. While we are somewhat sad to be moving, we know God has even more plans and lessons to come…

My husband has been working hard, packing boxes upon boxes (he’s so fantastic at organizing! He’s mine.) I’d say, we have downsized from years of clothes, items, knick-knacks to what we need. I believe the upside to moving so frequently, it allows you to be thankful of the bare minimum. We have been blessed aplenty, as over the years, we did have to giveaway furniture, and precious items which I loved. But then I realized, how God replenishes once you see those things have no value here upon earth. They are simply temporary pleasures of life–a momentary comfort, if any.

My health this year has been up and down, though, not my worst year. I am so thankful to be without cancer this year. I have been unbelievably exhausted the past few months. I finally decided to get a referral to a Hematologist. Whenever my hemoglobin levels go below 10, I experience these horrid symptoms: shortness of breath, heart palpitations, painful leg muscles, skin heals slower, fatigue, tiredness (I have fallen asleep at my desk), and weakness. A few doctors I have come across, don’t usually transfuse or infuse until the hemoglobin levels have gone below 8-7~ range. That, however, just does not work well with my body. Combating Epidermolysis Bullosa (and winning!) on a  daily basis in itself is tiring.

I finally met with my new Hematologist doctor this month. I spoke mainly with his resident, who was very moved by somethings she learned about me. I saw much emotion in her. I could see genuine concern in her about my mental well-being. For anyone, any pain is traumatic to endure especially when emotional pains are added to the mix. While I am human, I do have emotion–I get very sad, like anyone else. Mourning is healthy; however, it’s joy from Jesus I receive immediately after every and any event to come into my life. He doesn’t leave me alone, ever, even when I make the dumbest moves. That is my eternal comfort. With that, God has given me a wonderful husband who shows me unwavering care and love. It puzzles people. It truly is out of this world.

Blogtember: My Dearest Facebook Friends

Dear Facebook Friends’:

I love you, dearly. I am not a perfect human being myself. I thought this blog topic idea was a brilliant way to express what frustrates me most about “Facebook gurus”.

Grammar/Spelling meanies: I would much rather cringe at nEtz spek than someone who honestly tries to use grammar/spelling to the best of their ability. There are some individuals who take it way too far, and try to belittle a person because they measure their “lack of education” (so they think) by a few typos and/or poor grammar. Witnessing people rip aimlessly into a person because of a misspelled word is only a way to gain a sense of power, in my opinion. Well, there are many who have dyslexia, learning challenges, or overall struggling comprehending reading and writing. Some of these people have gone their entire life without knowing they have had these challenges. Heck, I have my moments, too. Don’t we all? I have learned to back off from over correcting people on the Internet because we just don’t know everything. It just shows the bad side effects of social media can give us a “god complex”. So, please, let us all tone it down.

Hashtags: I am guilty of the use of these, but I have an excuse! When I cross-post from Instagram, for instance, it automatically adds them to my Facebook post! It is honestly, rather pointless, at least on Facebook. I can see using it for charity, or finding a specific company via hashtag on Facebook, only if it’s name is unique. Have you actually tried searching hashtags on Facebook? I have. It’s rather unorganized and random. I believe keeping it strictly on Twitter is probably the best idea. Silly Facebook, hashtags are for Tweeters! ;)

Relationships: All right, it is your relationship, we get that; however, please stop going from “in a relationship” to “single” (vice versa) every 2 hours. Facebook is a networking site, not a live soap opera. It is a cry for attention to the your significant other. Communicate with each other even if you think they are to no avail. Go to a non-gossiping friend who you can confide in for advice until you can speak with your partner. The bi-polar statuses shows insecurity, lack of trust, and a very rocky foundation in your relationship which reflects immaturity on both your parts.

Regardless of these frustrations, I still love each and every one of you.

Love,
Monsie




Bath & Body Works itty bitty HAUL!

Guess where I went last week?

Yay!

Yay!

They are having their seasonal sale of amazingness, and I haven’t shopped at B&B for years. I usually keep my skin products mild, natural, and healthy. However, in the drier winter months, there aren’t a lot of lotions that help me stay moisturised while smelling good. I LOVE smelling good without the overwhelming scent. As a rule of thumb, I am very picky with perfumes and body mists. It is sometimes hard to find more natural products that stays smelling fresh and clean all day. So… my weakness: BATH & BODY WORKS SCENTS! Some scents are very potent, and others are light and fresh. My FAVORITE:

Buy 3, Get 3 FREE

Buy 3, Get 3 FREE (stores/online store may vary)

Signature Fragrance Collection
Triple Moisture Body Cream
Japanese Cherry Blossom
$12.50

Signature Fragrance Collection
Fine Fragrance Mist
Japanese Cherry Blossom
$14.00

My local Bath & Body Works in the mall was having a buy 3 and get 3, and you could buy a mix of different scents, I believe. I decided on four body creams and two body mists. I think it’ll last me until I am 100 years old. Japanese Cherry Blossom scent works well with my chemical make up. The fine mist fragrance is light and fresh smelling; I use 1-2 spritz, and it lasts ALL day without a weird faded scent! Yeah, buddy!

BLOGTEMBER: Life With & Without Social Media and Blogging

Discuss ways that blogging or social media has changed you.

I could probably write a book on the many thoughts on how it has blogging and social media has changed me. Where to begin? Well, after leaving school, I was homeschooled from middle school to high school. My first working computer I received ran DOS and Windows 3.1. It scares me to say that, as it seems forever ago! I used Prodigy Online/CompuServe and AOL (America Online) as my very first at-home Internet providers, which both were always trial versions for a long time. I went to chatrooms, played games, read news articles, etc.

It was about a year later, I finally had a working computer with Windows 95 and a newer version of AOL. There, I communicated with acquaintances and friends I had met through my independent studies nearly on a daily basis. We mostly used the e-mail and instant messaging platforms to keep in touch. I slowly researched and became self taught in HTML coding and graphic design (I wish I had screenshots of the very bland websites I had created).

As I reached teenagehood, I wanted to explore more outside of my box. So, I played more computer games specifically one called Petz 3 and Petz 4. Does anyone remember that game? Yes, it was years of endless entertainment for me. I found an AOL chatroom called “showzcentral” where I interacted with others players around my age, sharing the same passions. On account to owning that game, it brought me close to amazing friends, one I consider my sister.

A few years later, I started a LiveJournal account where I would often vent my feelings of my life. I can say, I had moments of encouragement, but also, many moments of depressing rant-y posts. After being diagnosed with cancer at 15 years old, I had many years of hospital walls and being at home constantly.  Blogging and social media had been a support system since I didn’t readily have friends I could confide in locally. Complete strangers helped me understand my feelings, and know that I am a gifted human being. It has allowed me to show my capabilities even if I don’t have a job, or a college degree.

To make a long story short, I would not have met the amazing people who remain in my life today due to blogging, social media, and just use of the Internet itself. Although I am still very introverted, it has helped me see another side of the world, and I have found people that understand me. I am very blessed and thankful for all of you. You know who all are. I hope to continue my journey through life with blogging in hopes to help others as they have helped me.

 




Personality Type: INTJ

Take this short personality test and respond to your results. (at the end, find the detailed profile of your personality account – click “click to view” under “You” and “self awareness and personal growth.” You can even google your type and find more info on it!)

 

As an INTJ, your primary mode of living is focused internally, where you take things in primarily via your intuition. Your secondary mode is external, where you deal with things rationally and logically.

INTJs live in the world of ideas and strategic planning. They value intelligence, knowledge, and competence, and typically have high standards in these regards, which they continuously strive to fulfill. To a somewhat lesser extent, they have similar expectations of others.

With Introverted Intuition dominating their personality, INTJs focus their energy on observing the world, and generating ideas and possibilities. Their mind constantly gathers information and makes associations about it. They are tremendously insightful and usually are very quick to understand new ideas. However, their primary interest is not understanding a concept, but rather applying that concept in a useful way. Unlike the INTP, they do not follow an idea as far as they possibly can, seeking only to understand it fully. INTJs are driven to come to conclusions about ideas. Their need for closure and organization usually requires that they take some action.

INTJ’s tremendous value and need for systems and organization, combined with their natural insightfulness, makes them excellent scientists. An INTJ scientist gives a gift to society by putting their ideas into a useful form for others to follow. It is not easy for the INTJ to express their internal images, insights, and abstractions. The internal form of the INTJ’s thoughts and concepts is highly individualized, and is not readily translatable into a form that others will understand. However, the INTJ is driven to translate their ideas into a plan or system that is usually readily explainable, rather than to do a direct translation of their thoughts. They usually don’t see the value of a direct transaction, and will also have difficulty expressing their ideas, which are non-linear. However, their extreme respect of knowledge and intelligence will motivate them to explain themselves to another person who they feel is deserving of the effort.

INTJs are natural leaders, although they usually choose to remain in the background until they see a real need to take over the lead. When they are in leadership roles, they are quite effective, because they are able to objectively see the reality of a situation, and are adaptable enough to change things which aren’t working well. They are the supreme strategists – always scanning available ideas and concepts and weighing them against their current strategy, to plan for every conceivable contingency.

INTJs spend a lot of time inside their own minds, and may have little interest in the other people’s thoughts or feelings. Unless their Feeling side is developed, they may have problems giving other people the level of intimacy that is needed. Unless their Sensing side is developed, they may have a tendency to ignore details which are necessary for implementing their ideas.

The INTJ’s interest in dealing with the world is to make decisions, express judgments, and put everything that they encounter into an understandable and rational system. Consequently, they are quick to express judgments. Often they have very evolved intuitions, and are convinced that they are right about things. Unless they complement their intuitive understanding with a well-developed ability to express their insights, they may find themselves frequently misunderstood. In these cases, INTJs tend to blame misunderstandings on the limitations of the other party, rather than on their own difficulty in expressing themselves. This tendency may cause the INTJ to dismiss others input too quickly, and to become generally arrogant and elitist.

INTJs are ambitious, self-confident, deliberate, long-range thinkers. Many INTJs end up in engineering or scientific pursuits, although some find enough challenge within the business world in areas which involve organizing and strategic planning. They dislike messiness and inefficiency, and anything that is muddled or unclear. They value clarity and efficiency, and will put enormous amounts of energy and time into consolidating their insights into structured patterns.

Other people may have a difficult time understanding an INTJ. They may see them as aloof and reserved. Indeed, the INTJ is not overly demonstrative of their affections, and is likely to not give as much praise or positive support as others may need or desire. That doesn’t mean that he or she doesn’t truly have affection or regard for others, they simply do not typically feel the need to express it. Others may falsely perceive the INTJ as being rigid and set in their ways. Nothing could be further from the truth, because the INTJ is committed to always finding the objective best strategy to implement their ideas. The INTJ is usually quite open to hearing an alternative way of doing something.

When under a great deal of stress, the INTJ may become obsessed with mindless repetitive, Sensate activities, such as over-drinking. They may also tend to become absorbed with minutia and details that they would not normally consider important to their overall goal.

INTJs need to remember to express themselves sufficiently, so as to avoid difficulties with people misunderstandings. In the absence of properly developing their communication abilities, they may become abrupt and short with people, and isolationists.

INTJs have a tremendous amount of ability to accomplish great things. They have insight into the Big Picture, and are driven to synthesize their concepts into solid plans of action. Their reasoning skills gives them the means to accomplish that. INTJs are most always highly competent people, and will not have a problem meeting their career or education goals. They have the capability to make great strides in these arenas. On a personal level, the INTJ who practices tolerances and puts effort into effectively communicating their insights to others has everything in his or her power to lead a rich and rewarding life.

Source: Introverted iNtuitive Thinking Judging

BLOGTEMBER: Three Months of Regenerating

If you could take three months off from your current life and do anything in the world, what would you do? 

BLOGTEMEBER: A building nearly swallowed me

A story about a time you were very afraid.

January 13, 1994 it was an eerily gloomy day in Southern California. We had days with marine layer, fog, and coastal eddies, but there was something so different about this day. I remember hearing a few strangers uttering how the day looked and felt abnormal, even my mother kept repeating “What a weird day…” At the tender age of 10, I was sensitive to feeling uneasiness myself.

I vividly remember sitting in my living room area, spending time with my beloved childhood cat named Fluffy (such a creative and unusual name, I know!) I was daydreaming as always, but we (Fluffy and I) just peered outside our sliding glass door wondering, “What is wrong today in the world?” It was as if we were both awaiting the arrival of an alien spaceship, or perhaps, my cat was awaiting the arrival of the largest cat-condo with cubby holes filled with cat treats and a lifetime toilet paper tubes.

Ten o’ clock came around, my precious bed time: I said goodnight to my mom, my cuddly cat and feisty parakeets, followed by saying a peaceful prayer quickly falling into the deepest of sleeps.

January 14, 1994 at 4:31 am


[banging sound on bedroom door]

“WAKE UP! WAKE UP!”

[banging continues]

“ARE YOU OKAY?”

I thought I was dreaming. I didn’t have any emotion right away. I rose up from my pillow, rubbing my eyes, “Mommy?” I heard my mother, but didn’t see her. She wasn’t in my room. Wait, it wasn’t a dream. I heard the terror in her voice as she continually kept using her foot and body forcefully to get my bedroom door opened. I was perplexed as to why my door couldn’t open. I just stayed in my comforting warm bed trying to make sense of it all. I heard noises above—I thought my wild and loud neighbors were having a party of their lifetime as they would normally. But then, I heard horrific noises, horrific. Ever watch the movie War of the Worlds by Steven Spielberg starring Tom Cruise? Do you remember the eerily out-of-this-world sounds? Well, that is my best description. That is all I heard, and creepy noises coming from the ceiling.

Finally, my mother made way into my room after repeatedly kicking and shoving my door a good 30-40 times. It felt like an eternity for us both. There was no electricity in our building. There was a glimmer of light coming in from my bedroom window. It was just enough light for my mom to grab my bedsheet, and my flimsy black and neon pink tennis shoes. I had no pants on; only a thin t-shirt and underwear. Ah yes, real classy.

My mom figured our front door would be unable to open, so she took us through my bedroom window. The downside about my bedroom window was it was about 3 feet high or so—give or take. My mom is only 5’2” and I was only 4’ish tall. We had no step stool handy. Cleverly, my mom used my birds’ cage as a step up (see, having animals can save your life in mysterious ways! Take that, to certain people who said I should giveaway my pets, nyah!) The window being awkwardly high for us, required my mom to pick me up under my arms/sides. Well, needless to say, with fragile skin, I felt my skin slip away. Basically, all the skin on my side was no longer available for use. Uhh, how dare you skin. How dare you! I don’t even think I cried because by then I was going into a somewhat shocked state of mind.

We made it out to the front of the building, it was darker than the inside of a Boogie Man’s closet. I saw, what appeared to be, hundreds of wandering people outside. Men, women, children, dogs, cats… screaming, crying, cussing, praying, and trembling. Still, I could not fathom in my mind was the heck was happening. I don’t think anyone else could either with the repetitive question, “What is happening? What is happening? What is happening?” I looked up to the sky to such beautifully lit stars, “God, are You revealing yourself?” And no, it isn’t something to laugh about. I was truly serious. I look to my left, there were fires. Look to my right, there was gushing flowing waters from broken water pipes. Streets were randomly bursting into flames due to broken gas lines. The sounds, the smells, the fear.

We were told we had to move further and further away from our apartment because our apartment had a dangerous gas leak. I don’t even think that fazed us. I believe in our mind, if we had all blown up, perhaps it was for the better. Even with that warning, several people lit their cigarettes immediately being told there was a gas leak.

 As the time went by, we were informed that the city was hit by a 6.7 earthquake. The epicenter was right in our city. I thought to myself how we learned about earthquakes in social studies class, and how often earthquakes hit other countries completely destroying cities. It was such a surreal feeling to live it.

Northridge-Earthquake-1994

A car was passing by with their headlights on; it hurt our eyes because it has been so pitch black dark out. I heard several people gasp in exclamation, “What happened to her eye?!” I looked around, seeking out who they were referring to.

Oh my GOSH!” My mom shouted.

I looked down; my upper t-shirt was covered in blood. I was instantly confused. “Her eye,” everyone said in a concerning whisper. I had a very deep gash about 1mm from my eyeball. I did not even feel it. I have no idea how that happened to this day…

northridge-earthquake-serious-damage

We sat across the street, waiting, hoping, that perhaps, we could all go home. Complete strangers did everything to make sure everyone’s needs were being met as a community, not just for themselves. I had a man with his family, put his arms around me, with a heavier blanket comforting me, “You’re going to be OK.” I was dirty, bloody, and a complete stranger, but the kindness of everyone just poured out. It wasn’t as if people were always rude and obnoxious, but with California being so fast paced, it was challenging to get to know one another. It was weird to see so many people help one another without question.

I think back on that day sometimes. People wonder why I would think of something so painful and disturbing. I want to remember. Anywhere, anything can be wiped away, everything. I realize it could have been a lot worse, and we could have remained homeless, or could have died if it wasn’t for strangers who risked their lives to get medical supplies and our needed possessions. I just thank God for sending angels and wonderful friends our way, to mend.