Thank you for loving concern, prayers, thoughts, etc. Today was a long day for everybody. My dilation was delayed due to unexpected surgeries that took priority over my procedure. I was under for 2 hours for a 30-45 minute procedure because my wonderful GIs went very at a slower pace. This was my first official “real” dilation in my entire life with EB. They were terrific. It was also my first time being intubated by an anesthesiologist, too. Everything was done with a wonderful tender hand. I feel like a new person. Back story: I had an attempt for dilation in Utah with the best GI doctor in the state, but he felt was not experienced enough in Epidermolysis Bullosa. Furthermore, he felt he would perforate my esophagus. While feeling hopelessness after his decision, I am very thankful he turned me away for future procedures. I’d rather be miserable awaiting that special person to help me than deal with irreversible consequences. His heart was in the right place.
What I am about to say is not a cry for attention or pity: It has been a challenging 6 years, honestly. I have shed many tears. Had many counseling sessions. There were many scary moments within my own head. I know a multitude of us have gone through numerous events in life. Things we never thought we’d go through or live through. Little by little, my social life has been shorten just trying to survive. Thankfully, I have friends’ that have chosen to stick close even when I just wanted to hermit. I have not been the best daughter, friend, stranger, etc.
I waited 3 years for a proper diagnosis from hospitals back at home to explain why my chest was giving me issues (since I had not experienced a very small stricture–I was stumped.) I was just given pills or diagnosed with anxiety. I had anxiety and some panic attacks, but I wanted to know why. I only received 3 hours of sleep per night. Food pooled in my upper chest. I felt an elephant on my chest constantly. I was “hangry” all the time. All the time. I suffered dehydration. My stomach grumbled every hour around the clock. Yes, it has sucked. On top of that, I have had dealt with personal battles from different directions. I would rather not delve into it publicly online just yet, or at all, but I am letting you know, you will preserver.
Sometimes I only post happy shiny posts. Social media really allows us to filter our lives to “perfection”. People get this idea I have money, that I can travel whenever I want. Again, all blessings of dear people who have been beyond generous. My travels have been pleasure, but mostly medical as of late. As of now, I get $17.15 per month for my personal income. It takes me over a year just to save for small selfish purchase for myself. I am not complaining, just being raw. This is my reality. I sometimes forget, too. There’s no such thing as perfection. I simply wish to show positive more than negative; it’s what I hold dear to most often. We deal with a lot negative in our world today. Without some of those flaws, bumps, and cracks, we would not have a new stepping stone/hurdle to climb to a decent outcome and outlook on our strength. [Un]fortunately, discomfort is a necessity to get ahead and teach us something new–rebuild grow, renew. Without a climb, how do we build muscle? Speaking within self. Through such negative or discomforting moments, I usually refrain from spreading it, or become calloused by the discomforts of life. It causes a cycle of a hardened shell. I am not guiltless of this. It happens. I would much rather smile through it than be unhappy.
Stanford Hospital experiences, for the last 2 weeks, all around have been phenomenal. Every doctor, nurse, coordinator, social worker… truly a godsend. They kept telling me how blessed they felt coming across me as a patient, but I felt they were the angels. I saw their sacrifices, not just for their families but their “hospital family” as well. With with my depression and lack of self worth the last several years, I thanked God wondering how I deserved such personable loving people? The true medicine was the laughter we shared, however, just listening to each person’s story was an eye opener leavinng me inspired.
I am going home with a full heart…
What is Epidermolysis Bullosa (EB)?
I am going to describe EB in my own words and terminology. Please excuse any incorrect ways I might describe EB in advanced. To clarify, I am also going to describe EB from my own mental and emotional prescriptive. I will share an example to give a small depiction of what EB entails—the bad and the good. If I say anything that offends you personally, it is not aimed to offend anyone nor am I saying this how you should live. These are my feelings.
Epidermolysis Bullosa is a genetic skin disorder that affects the connective tissue between the epidermis and dermis with constant blistering. It can also cause blistering of the mucosa, from eyes to the mouth to the anal region. The esophagus suffers blistering (for me, the most painful next to eye abrasions) which leads to esophageal strictures. A simple meal can turn deadly due to choking and blistering that can obstruct the passage. The average adult esophagus is 14-20mm, but someone such as myself with EB is only at 2mm (5mm after surgical dilation.) The eyes can have abrasions which can cause abnormality to the eyes cornea. Depending on the severity of the abrasion, it can lead to permanent damage (scarring) which can limit the sight or cause complete blindness. Eye abrasions should heal within 2-3 days but with EB it can take up to 1-3 weeks. No light should be let into the eye. The best healing method is being in a dark room with the eyes closed. Aside from the excruciating pain, the mental anguish can be crippling being further confined.
There are several subtypes, but hundreds of mutations in the EB gene. In my subtype (recessive dystrophic), I am missing the “hooks in my velcro” (collagen VII), that allows the skin to stretch with friction and touches. I am often left with scarring which has caused my hands and feet digits to become “mittened” or webbed (complete syndactyly). More commonly seen in recessive forms of EB, the scarring can limit mobility and function of limbs. In severe cases, the deformities and/or discomfort can cause limitations to walking for long periods (i.e. why I have used a wheelchair.)
There is some envy behind the simplicity of those who can get to shower within 10 minutes or dressed within 5 minutes. I don’t want to make it sound like I am completely immobile because I am not. After the years of the process day in and out, you would think one would be used to it. Never. I love showers. I love the feeling of being free of my gauze, seeing my actual skin. Mentally and emotionally, I loathe the process. Not so much the preparation of the gauze, but building my mental state to withstand the excruciating pain that jolts through me every dressing change. The rushes of adrenaline are exhausting. Even taking off day-old gauze can be a detrimental process in itself. If a non-stick pad that covers my wound from sticking to the gauze shifts, sometimes I am unaware and will tear off completely stable “strong” skin around the wound. I have screamed and trembled with anxiety, nearly letting out the profanities swirling through my head at that moment. On rare days of fatigue, my emotions can range from a mixture of rage and sadness. I never want to take out my pain on anyone around me, not to say that has not happened before. No one deserves to see that side of me, the side I loathe feeling. I chose not to give too much of my precious time.
Wound care is a tiresome job for me and my caregiver (usually Justin). From preparation to finishing my wound care by the caregiver can take 3 hours, sometimes 2.5 hours on a good day. If I do it entirely on my own with unopened wound care supplies, it could take me 6 hours because of the webbing of my hands slows the process. It can be frustrating when people say, “You’re so lucky you don’t have to go out to work.” Words of ignorance but my survival of my disorder has been a full-time job. Does it impede my social life and those around me? Greatly. Growing up, people did not understand why my mom or I could not meet or talk on the whim. Even with an explanation, some people did not want to grasp or even believe it. That in itself can make you feel worthless. You can really find out who really listens and cares when you or someone dear to you has health challenges.
Epidermolysis Bullosa is much like a full-time job for both patient and caregiver. There are very rare moments when you can live life without thinking about EB. Every movement has to be planned out in my head so I don’t upset my skin somehow. Even days where I am feeling “healthy”, I have to consciously be aware of what to do and what not to. Throughout my childhood, I did not fall a lot, but when I did fall, they were very traumatic falls—with the full-on gore of blood and missing skin. Because of those falls, I have to remember how and why those falls occurred.
A major use of our toes is for balancing. EB has caused my toes to mitten due to the scarring. My toes started fusing together from the early age of two. Before different wrapping methods were practiced to slow the scarring of the digits, surgery was largely recommended when I was younger. I had surgery on my right foot to separate my toes and straighten them. The doctor put me in a cast, which over the years, doctors realized that was not a good idea for someone with EB. When the cast was removed, there was a 6-week old xeroform dressing healing into the wounds of my foot. Xeroform is a type of pliable petroleum based wound dressing. From my own personal experience, I am not fond of the dressing, especially for surgical wounds. They dry out too rapidly for me personally. The doctors did not give me pain relief for the nightmare under the cast. The xeroform that was essentially now becoming part of me, literally, was being ripped out of my wounds. Wounds that were nearly healed were reopened, forcibly. I was only two, but I will never forget my heel was completely red raw and bleeding. Lessoned learned: never wear a cast when you have a genetic disorder that constantly breaks down and needs care, every day. Not only did that cause my foot to become worse before the surgery, the surgery did not help my foot’s deformities as it healed. As I grew, it was difficult to do physical therapy on my foot without causing blisters. My other foot that I decided against surgery upon has scarring and some fusing of the toes. It is more stable, balanced, and less painful. The foot that had surgery, the toes are now in a “W” shape beneath all the scarring. My toes are basically pushed upward and toward my body. My shoe size is women’s 6 (without socks and gauze) but if my toes were stretched out they would be an 8 or 9. Doctors are usually amazed how well I can walk, though, it is limited. The metatarsophalangeal joints are constantly under strain because of the locked bent position they are in. A past doctor described it is equivalent to walking on the tips of my elbows.
Sharing the tidbits of the challenging parts living with EB, shows the “bad” about living with EB. What is the good that comes from it? With anything challenging in our lives, we come to learn the good from the bad. There are uncountable times people have tried bringing me down, telling me I cannot do this or should not do that. This only made me stronger to take chances which have given me a fulfilling life. Granted, I don’t like what EB can do and has done, but I accept the challenge, to kick its butt! I love seeing the miracles that are gifted to me each day. God has shown His kindness and mercy through my life and the wonderful souls that I have grown to know. If it were not for my disorder, my life story would be completely different. For the better? Maybe. Maybe not. To me, I live in this moment of greatness given to me, making the best of each day even during those rough days. Health challenges of any sort should not define who you are, it is just a small part of you. EB seems vast, but it is just a small part of me. EB has made living challenging, but I have not allowed it to disable me.
I try not to allow EB define me as someone that is just “a disable”. Put your all in anything, you will overcome.
We beat EB every day.
The course of the last several months has been a mixture of fun and health ups and downs. Let’s cover the trying parts, shall we?
My health has been pretty stable for the past 2 years — no cancers and iron level has been stable with yearly intravenous iron therapy and supplements. The past year I have been rather quiet about an issue I have been experiencing internally. I have had a strange lump rollabout in my solar plexus region. The sensation started out feeling small and less troublesome. If I attempted to bend over, it would feel as if a marble rolled from my spine to the front of my chest. It was alarming, but did not hurt. After a few months, the sensations increased and the sternum pressure started. I went to my local hospital’s ER a few times for the fullness sensation I was experiencing in my chest. It felt like I couldn’t breathe, or my chest was craving in. Being safe, I listened to my body. I kept going into the ER and was diagnosed with different issues each time. Though I felt unsatisfied with each diagnosis, I went on living my life and hoped everything would work out itself.
Over the past year, my levels of uncomfortableness increased each day. Sleeping was now a lengthy process (I get about 3 hours of actual sleep per night lately — on a good night.) Laying down was like an elephant was upon my chest. My resting blood pressure would become menacingly low. Not to mention, eating was more of a chore than it had been. Eating binding foods such as breads, broccoli, and quinoa, for example, completely horrendous pressure afterward.
The past couple of months, I had a painful spot on my arm which did not appear to resemble Squamous Cell Carcinoma (SCC), just alarmingly painful. The simple gentleness of fabric brushing against the spot felt like razors. I made an appointment with my wonderful Dermatologist, to perform a biopsy and hopefully remove most of it in one sitting (it was positive for SCC). During the numbing process, I became lightheaded and my chest felt aggravated and heavy, but I could feel myself blacking out. My doctor immediately saw my distress, and helped bring the blood back to my cranium. I spoke with my doctor about the issues I had been experiencing the last year, and he urged me to see my last G.I. doctor, not the local doctors in my small town since they don’t have the specialty to equip my disorder.
After a pre-visit appointment with Gastroenterology, we formulated a plan best for figuring out what may be the issue. Tomorrow, I am going in for a scheduled Esophagram and on July 29, the university scheduled me for an Endoscopy procedure. There is no guarantee whether the Esophagram will answer any questions, but I am praying it does. The exhaustion — physically and mentally — from this has been leaving me on empty. What could it be? There only has been speculation from a few doctors’ and nurses’ that my esophageal strictures (a complication due to Epidermolysis Bullosa) could possibly be worsening and/or developed a hiatal hernia. Whatever the issue, I pray I continue to have faith, strength, and a calm heart.
Going through grief has been a challenging roller coaster. My goal is to share my rawness of grief to others, and I am not saying my ways of grieving are correct. I have wanted to write on grieving especially when I lost one of my best friend’s, Jamie. However, life has been quite hectic followed by a few more people I have known that passed in 2014, last passing being in December. A dear person whom I was very close to, who treated me like their own blood. There is no preparing the tidal wave of emotions, survival’s guilt, and hopelessness felt afterward. The gut-wrenching heartache felt for the immediate family members and wanting to erase the pain and struggles that they may face without that person in their life.
While we all experience grief differently, we are all human. We share the similar emotions: sadness, fear, anger, joy, surprise, and love. For me, grieving is something I haven’t done well, or simply altogether avoided growing up. There is a resistance to sharing my emotions with others. I am almost afraid to cry especially in front of others. There were instances some would say I am emotionless, callous, or disconnected. When, in fact, that was the very opposite of what was going inside of me. In my case, I have had to be strong physically, mentally, emotionally, and spiritually from I could remember. My feelings run deep especially for those I care about. When sadness struck close to home, I would feel sadness followed by anger especially in death. In the past, I would usually let my tears flow in the darkness of night when everyone had fallen asleep. The next morning, I would push aside the sadness and put a smile on my face.
This time around, the grieving was almost unbearable for me to handle. Honestly, it was the first time in my life to really feel the ache of grief physically and emotionally. There were so many lives and scenarios of people dealing with a loss, and furthermore, dealing with knowing those people are gone here from earth. I went through rage, sadness, guilt, grieving, more rage then depression. It wasn’t anyone’s fault but my own. I would cry, but suddenly stop, thinking I needed to be “strong”. Stopping my emotions only led my sadness to lead to depression. The depression was causing nightly nightmares, thoughts, and feelings so dark I wanted to run from myself. I felt guilt because I wanted to comfort and help those in the immediate loss, but it was unbelievably challenging loss after loss.
Someone I could confide in recommended perhaps I should see a counselor. Truly the thought of expressing my feelings to an unknown individual was intimidating for multiple reasons. Years ago, I hadn’t had the best experience with therapy. However, I needed to let down judgment that all therapists were like so. I prayed about it, finding a decent Christ-based counselor in my town.
I have been attending lessons for a few weeks. The sessions have been rather validating. I don’t feel “crazy” especially with certain feelings I have been experiencing within. It is one thing hearing it from someone you care about versus an outside source. It truly has helped me understand it’s OK not be OK. It is also definitely OK to cry. I had a wonderful California trip this month with my bestie. The moments to myself, I just cried and cried. Praying, being silent at that moment. Thinking of those hurting; those who have lost; and those that are gone in the physical sense. The importance is sharing what they have blessed me with internally. Life’s sessions run deep with those that have come in and out of your life—the good and bad. Showing your emotions isn’t a weakness. One of the strongest men who ever lived, “Jesus wept.” John 11:45. Shows He knows our pain and suffering with such deep sympathy. Sometimes we may find ourselves face down from being strong too long. There isn’t anything wrong seeking or asking for a hand to get back up, slowly.
If someone reading this is feeling alone in any type of grief, sadness, and/or depression, and perhaps you can’t get back up. Please, seek help, or talk to someone that will just listen. It is important to mesh with someone that will be of comfort, not judging your emotional reactions. You are not alone. There are many dealing with unresolved emotions, losses, and depression that needs attention. You will be loved. You are loved. You are important. Even if I don’t know you, I want joy for you. Take that step to healing.
Summer is here! Not usually my favorite time of year due to the temperature spike and my skin disfavoring the climate differences, but I am looking forward to summer desert storms.
We purchased a few plants recently. If you have a small apartment/house that needs some life, plants really make a difference for your mood. I enjoy seeing life grow, responding with your care as nature handles the rest. I have been reading up on the care of each plant’s specific needs–I’m hooked. The information has helped me bring life back in a few wilting herbs and aloe plants I picked out. I always gravitate toward anything needing some love!
Mr. Tomato Plant as “he’s” affectionately called, is actually three times the size now. If he continues to grow strong and healthy, I will add updated photos!
Happy parsley! Grow baby, grow!
Beautiful Basil is growing so quickly. It was rather unhappy when I first purchased especially after discovering aphids were slowly sucking the nutrients from several leaves. I think the issue is under control, for now, thanks to neem oil. My herbs, aphids… mine!
My Lunabug is absolutely beaming in the sunshine. I don’t think she misses the snow and ice. ;)
How can you not love that face?
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.
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.
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)
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.
Guess where I went last week?
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:
Signature Fragrance Collection
Triple Moisture Body Cream
Japanese Cherry Blossom
Signature Fragrance Collection
Fine Fragrance Mist
Japanese Cherry Blossom
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!
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.