What a year so far. I have wanted to focus on my goals for this year, but we have been experiencing some trials…
After our move, I had been cut off state Medicaid. They claimed my husband’s $1300 per month for two people, is too much income for the household. I received no warning. I had little gauze left to do my daily skin care. It breaks my heart to ask others in similar situations such as myself, to spare what they can. It kills me the state can turn my life upside in a heartbeat, and jeopardize people’s health. It is a very dehumanizing feeling especially when you simply cannot shower every day because you do not have enough. Most of my calories are administered nightly through my g-tube because my esophagus is only 2mm, so I have to be careful not to consume all the formula that is my lifeline.
Don’t get me wrong. I do not sit around, making myself a victim, or sit around wanting pity. I advocate for myself on a daily basis. I am a fighter. However, it does make me feel guilty to go to organizations for help. I know it isn’t my fault, but it is a human reaction to want to do more for yourself.
Back in December, there was a nasty sinus infection going around. My husband, unfortunately, contracted and battled with it numerous times, and his insurance did not start until January. Therefore, he had to go to Instacare in order to get treatment out-of-pocket.
January comes around, I am still feverishly finding out my options to get back on Medicaid. It was also time for my yearly Yosemite trip with my best friend. I was so beyond excited about our time together, for a whole week of beautiful California. A few days into our trip, I finally caught the sinus infection full force, and then sadly, passed it on to my best friend (I’m sorry! :() While away in California, my poor Justin was ill again with the sinus infection and cough. When I had returned from our trip, our friends from Arizona were coming in a day after I had arrived back home. We were feeling a bit more stable, but the cough would not go away. We all had a fantastic time going to Bryce Canyon. We all had an incredibly awesome week in a very long time.
Over a week later, after everything was going back to the norm, my husband came home from work, freezing. He did not once complain to me the entire day (we text back and forth throughout the day.) He is NEVER cold. He wears shorts in cold snowy weather while everyone else is in snowsuits. At first I thought, the sinus infection was coming back, but his face told me something else. I saw pain. His face was becoming paler, in a way I hadn’t seen before. He shivered into the evening until bedtime. I monitored him like a hawk. He needed to sleep, so I went to bed with him early (for me), that night. An hour and a half later, I woke up suddenly—as if someone told me to wake up, now. I have always been a dead sleeper until the sun rises, so that immediately made me check on my husband. He was burning up. I knew his fever was around 103.0 just by touching him. He was shivering so hard, it used all his energy. I also observed our dog’s behavior. She is usually always by my side, but that night, she would not leave him. Her face was full on worried without sleep.
“You need a doctor,” I said.
“No… too much… money,” he could barely utter.
“Your life is more important than money,” I said sternly.
He fell back asleep. I grew increasingly more uncomfortable and worried. I started feeling sick myself, but I got myself dressed and clothes out for him.
“You need to go now!”
“Can we wait until it is light out?” He asked.
“No! There is very serious, and you need to get yourself checked out, now!” I said in an angry tone.
My husband is amazing man, but he always puts himself last. In all honesty, this point agitated because he hasn’t seen a doctor in years, and I was just very scared. I knew for him to even want to be checked out later showed how seriously horrible he was feeling.
It took him a good hour just to get dressed while in-between he started vomiting and he could not stay up on his feet. He was becoming delirious. He was mumbling incoherently. I had to keep reminding him we had to leave and why. I grew increasingly scared. I was praying silently to myself. My emotions were shot and in shock. I had never seen my husband so helpless. His fever was also worsening…
Unfortunately, I don’t have a license, yet, but I do know how to drive, thankfully. He could hardly stay within the lines. He appeared to drift in and out. In a loud voice, I guided him on the road. It was 2-ish AM or so, thankfully, being in a small town, I saw only four cars on the way to the hospital. Two miles from the hospital, he could not steer the wheel anymore. I took hold on the wheel, dangerously, telling him when to accelerate and brake. We made it safely to the hospital. He started having intense abdominal pain, as soon as he opened his door; he vomited on the parking lot pavement.
“Do you need a wheelchair?”
“Do you need a wheelchair?”
I ran as quickly as possible inside the hospital’s ER doors. I could hardly talk, but I requested a wheelchair. I saw my husband’s silhouette slowly making way to the ER department, barely. I told him I was going him a wheelchair, but he told me he doesn’t remember asking for a wheelchair.
The nurse took him back right away, but insisted I sit down and stay in the waiting room for a bit. I sat out in the waiting area for over an hour. Longest hour of my life. After an hour, the nurse took me back to his room. I was just happy to be near him. He looked more relaxed getting to see me, but so lifeless. He kept requesting a warm blanket, but could not have one, as his fever was 105.0. When the nurse told me, the tears started flowing. I could feel that hysterical non-stop crying feel approach, but I needed to be strong as he has always been very strong for my moments in the hospital.
“Don’t cry,” he whispered.
“I should be the one in the hospital bed, not you. I want to take whatever this is away from you. It is hard being on the other side…”
“No, you don’t need to suffer anymore than you have.”
The diagnosis was influenza-A and a bad sinus infection. I was pleased it wasn’t something worse, but saddened because we had just been hearing and reading on statistics of how many individuals were dying from complications of the flu this year.
I could not tell you how many medications they pumped into him. He finally went into a peaceful sleep, but I watched his pulse, endlessly. I did not take my eyes off him. I was praying to my Lord for mercy; His warmth, and comfort. This was especially hard being a couple of weeks after the first anniversary of the loss our pregnancy. My mindset was raw, fragile, and worn thin.
Even in the midst of our weakness, God is there. He reassured me with comfort, and the thought of certain brothers and sisters going through similar trials, but they all were given a rope to make The Climb. I accept the rug pulled from beneath my feet, to strengthen where I am weak and lack wisdom (James 1:2-4). God only wants the utmost best for others and me.
Thank You for my best friend and husband.
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.
Ah, Recessive Dystrophic Epidermolysis Bullosa. It is like a full time job. At times people think it is so lucky of me not to be “stuck” at work all day. Well, I do work. I work to stay alive like everyone else, but with added challenges. My husband said the dearest thing to me recently, “Even though you are home all day, you do SO much for our family; your full time job is just working hard to stay alive.” How amazing someone sees how hard you work just to live. These words will be forever in my heart because you can feel so worthless to such a fast paced society; I know I am not worthless. I am so blessed to be given the strength to keep going. We keep a prayerful mindset and positive attitude to complete my chapter here upon earth. There are moments of tears, but you know, that’s OK. I lived for many years keeping my emotions in because being in physical pain 24/7, you feel numb—people start to wonder if you care. Well, I do. I always have, and always will.
Recently, I had been prescribed a drug that nearly killed me. Never have I experienced such psychological and physical disturbances over a drug’s side effect. While I sound like I am overly exaggerating, a husband’s tears don’t lie. There are some days I can’t even recall anymore. Some of the side effects I can remember: nausea, muscle pains, back pain (specifically my spine), MIGRAINE (2 weeks later, still lingering), bone pain, stiff neck, confusion, stuttering, nervous, vertigo/sensation of falling, bradycardia, low blood pressure, severe panic attacks, depression, loss of appetite, uncoordinated, numb arms, etc. I only took the drug for two days. These adverse effects for the drug are extremely rare. At times, doctors (not my regular doctor, who is wonderful) almost patronize me, as if it is IMPOSSIBLE for me to react to certain treatments like my body has. Isn’t it enough that I was born with a rare condition to think I may respond completely different, or perhaps, to remember not everyone will respond as the majority? At times, we may need medications to help the body to being healthy again, but it is frustrating to feel like you to have risk your life to cure one thing, only to gain another, possibly, incurable problem. I truly thought I had another trial to face the rest of my life. I already combat the largest organ of my body, and all I could think about was, the possibility of permanent damage. Thankfully, I had my beautiful husband, my mom, and close friends sending prayers, and encouraging thoughts to help me as I declined each day. I am back on the road of recovery, slowly, and my vitals have finally come back to normal.
I am just thankful I can see my husband’s face clearly, once again. I am so blessed.
It is always important to communicate with your doctor. Personally, I usually opt out taking medications for obvious reasons, my body naturally doesn’t respond well. That is my personal choice, and what has helped me maintain longevity in my lifestyle. I, of course, am not advising anyone to stop taking medications without proper consent from your doctor. There are millions of types of medications (including alternatively) out there, and possibly one your body can handle, and help immensely. Communicate with your doctor. You may think your doctor is the boss, but truth is, you are. It is making a choice together to make you feel as healthy as possible. Lastly, research and read the side effects! I am guilty of not researching medications prior to administrating. Don’t hesitant to ask questions with your Pharmacist–no question is “stupid” when it comes to your well-being.
It has been while, hasn’t it? I took a bit of a hiatus. We had a lot going on the past few months. Honestly, it has been a blur. Big changes in our life, but all for the best.
Ha! I had not gotten to blog about my birthday which was back in February on the 23rd. I can say I was super spoiled. My husband does not know how not to spoil me! From the day we were just friends, he would send me gift cards and small gifts here and there–even “just because”. Yeah, he is pretty special.
Our best friend from Arizona came out the last week of February for my birthday. And guess what? We have had the wimpiest snow season for Utah until our friend arrived. Probably two hours or so after arriving, we started getting snow that actually stuck. We hopped outside like happy little children and enjoyed it for a bit. Later that night, we went to our local Wal-Mart to buy some snacks and fun items for our adventures. When we returned home we planned out a route of possible sight-seeing areas; however, the forecast did not look too promising. Snow, snow, and more snow. As much as I wanted the snow, I wanted to take in some beautiful parts of Utah I had yet to see.
The next morning was somewhat gloomy but pretty cold. We decided on going to Antelope Island and the Bonneville Salt Flats. The salt flats have been always a place I wanted to sit and take in from I was a wee-one. We were extremely wary about the weather as the snow clouds started to hover around the city. By the time we reached about 9 miles or so miles from Antelope Island, snow started to float down increasingly so. Though extremely beautiful, I was convinced our trip would be cut short. As we approached the entrance to the park, the skies were about 90 percent clear and utterly still. Breath-taking I thought. We paid our entry-fee and received a pamphlet which I read through, learning a quick rundown and history of the island. About a minute into our drive, our friend took some photos. I no longer have a DSLR and it is painful because I love capturing quality photos to print, document, and remember those moments of feeling serenity and euphoria in nature. It was as if the potent salted air parted the clouds from over the island. Around the receded parts of the beaches lay still-glass waters, reflecting the beautiful skies, clouds, snowy hills and mountains. As we kept driving further into the island, we could see the Wasatch Front and snow storms from afar facing the east side. Looking over to the west side, clear beautiful skies with cool breezes but a sun that warmed us just right. We kept driving, as we spotted the grizzly powerful bison, grazing in the fields peacefully.
We came to a dead end area with parking, but a secluded beach that was very much inviting. Little did my EB blistered feet know, the actual beach shore was further than it appeared. But my knight in shining armor, my beautiful husband, would not allow me not to experience the beauty of the Great Salt Lake. We had my wheelchair tucked away in our SUV which I insisted we used, not piggy-back (my hubby already has a bad back). My husband proceeded to drag my wheelchair through the grass and sand field first. We were reminded my husband is one of the coolest people on earth. My wheels sank deep and quick into the tender sands. My husband took short breaks, but I still felt helpless. He never complained nor made me feel helpless, he insisted to make me happy knowing it was a painful day for me. A walk that probably would only take five or so minutes, took about fifteen or more. We finally made it and it was ever so worth to him. There we were… best friends over looking one of the coolest lakes in the US. We were very blessed to have zero insects and low aroma. The sands held the tracks of wild bison that often run through. The thought sent chills through me, envisioning a power beast in a pack running alongside the beach. It must be an amazing sight. Not everyone is gravitated to nature, but I am. I feel I often take it for granted. In my personal belief, it is God’s way of saying I love you and taking my breath away with His art. We started a safe little camp-fire on the beach, just us and my puppy, Luna. The aroma of our roasting hotdogs and marshmallows alerted coyotes in the foothills to sing.
[box] Photography by: www.aaronbruhn.com [/box]
Ah, the month of April commemorates life, death, and new beginnings.
April 1st, 2011 marks a year after the long haul from Arizona to Utah. I don’t think I can even put this year into a paragraph, as many of you already know, it was a tough time. By the grace of God, we have made it. Our wounds are still mending, but God has the best healing touch around! My friends have been such an amazing part of getting through the moments where I felt like giving up altogether. Even those in the distance made me you were near, embracing us through it all. Throughout our pain and trails, we are recovering but learning from our experiences—it has been a trying time, but my husband and I are genuinely happy in our marriage. We won’t let any temporary dysphoria disturb our beautiful relationship.