Words to Live and Write by

I am willing to fall Because I have learned how to rise.

I craft Love from heartbreak, Compassion from shame, Grace from disappointment, Courage from failure.

I am among the brave and brokenhearted, and I am rising strong.

(credit to Brene Brown)

Monday, September 15, 2014

I Know What We Did Last Summer

 What a summer we have had! We did and learned a lot of new things - things we'd never heard of.

 June was a good month for us. The weather was getting warmer and the sun began making appearances. Lana, an Oregonian from birth, didn't know what to do on those blue-sky sunny days. Whenever we went outside or drove in the car she would shield her eyes with her hand and say, "Mommy turn it down. Mommy, turn the light off." I just told her that mommy didn't have that power and she'd have to talk to Someone bigger about it. Sometimes it even seemed to work. The weather flipped unpredictably between sunny, cloudy, rainy, and windy.

Not my backyard
 One particularly windy night we heard a loud crash outside - we peered into the dark, trying to see if a tree had fallen, but saw nothing until the next morning. You should know that Oregon knows how to grow trees - big trees everywhere, trees so tall sometimes you can hardly see the top. One of my favorite things about my backyard is that it is surrounded by these giant trees; you forget you live in the suburbs or that you have neighbors behind you at all. (That is until, much to my annoyance, one of our backyard neighbors decided to have all their trees removed. Now there's a gap.) In the morning we looked out back and saw that a tree from our neighbor's yard had fallen and landed across our shed. Fortunately, no damage to the shed was done and we just had to find a way to remove the tree. That's when the Elders' Quorum becomes very useful. Within a day or two, while Lana and I were out running errands, several guys came over and speedily and tidily removed the tree - a big tree - from off our shed and out of our neighbor's yard, too, leaving nothing behind but a small stack of usable firewood. What a blessing. It would be the first of many times we could call on members of our church to help, and they always responded quickly, quietly, and graciously.

 The moody weather seemed to have an effect on Anthony. Some mornings he would wake up with stiff, sore muscles, as if he'd overdone a work-out the day before. But as he moved around and warmed up his muscles the soreness would go away, so we didn't think much about it. It was a warning sign we didn't even know to watch for.

Neskowin, OR
 We wanted to do something fun to celebrate my 29th birthday in July and our 9th wedding anniversary in August, but we didn't know what we'd do. Some lovely friends from church offered to let us stay in their condo by the beach for a weekend at the end of June. And another lovely couple stayed with Lana and Ajax. It was our first time ever away from Lana for more than a couple hours. The beach we went to was remote and quiet (the town had a population less than 200 if I remember correctly), and the condo was absolutely beautiful. Because of the remote location, cell phone service was spotty and we didn't have internet service. So we had two whole days and nights entirely to ourselves. What a treat! We had forgotten just how much time there is in a day, and just how bored we could get. But we soaked in the ocean view (too cold to get in the water) and enjoyed just lounging around together with nothing to do but enjoy each others' company. We came home feeling so refreshed.

 We tried showing Lana some small fireworks for the Fourth of July, but the sun hadn't gone down and she was less than impressed. One of the sparklers dropped a small spark on her foot and she has a tiny scar from the burn. Poor baby.

 Then the real fun started. One week after the fireworks flop, Anthony woke up again with sore muscles. He thought he'd get up and work the soreness out, but as he shifted his weight to stand up his legs collapsed beneath him. Not only did they collapse, but he couldn't move them at all. He tried to pull himself back onto the bed using his arms, but they were weak, too. He could hardly close his hand enough to even grip the mattress or blanket. He hollered at me to wake up and help him. I was bewildered - I had no idea what was happening to him. And, being as petite as I am, it wasn't like I could lift him off the floor. Between his efforts with weak arms and me throwing everything I had into lifting up his lower body, we managed to get him back on the bed. But what to do then? We phoned an advice nurse, who also had no explanation, but said, "Get him to the ER now. Call an ambulance if he can't move." We asked how much our co-pay for an ambulance was, remembered how empty our accounts were, and tried another plan.

 We live close to my parents. It's maybe a four-minute drive, IF you get stopped at both lights. So I called for my dad to come help me get Anthony into the car. Less than four minutes later he was at my door, and, to my surprise, my brother Seth was with him. Seth lives with his family in Texas, but just happened to be up here on a short business trip. This was very fortunate, because Anthony was losing muscle control quickly and we needed two men to get him to the car. My mom came to take care of Lana while I drove Anthony to the hospital. Just before we left, we called on our nearest Priesthood holder (about four houses away) to come over and, together with my dad, quickly give Anthony a blessing. It was reassuring, and although we didn't know what would happen, we knew God was with us.

 We drove to our closest Kaiser hospital (where we're insured). In hindsight, that wasn't wise - it takes about 20 minutes to get there by freeway, IF there's no traffic; otherwise it can take an hour. Miraculously, even though it was time for morning rush hour there was no traffic. Had we known just how serious Anthony's condition was, we would have rushed him to the local hospital, five minutes away, because our insurance will cover that in emergencies.
  When we got to the ER we saw another miracle. There was absolutely no one waiting in the lobby. We've been to that ER (always for me) too many times to count and there is always a wait. But this time some aides rushed out to help Anthony into a wheelchair and took him straight back to a room. By this point, Anthony could barely move at all. The nurses and doctors came faster than I'd ever seen in an ER (the wait is dreadful), took his vitals and got an IV to begin hydrating him. They always hydrate because most people go around somewhat dehydrated all the time. Only a couple minutes later the doctor hurried back with some blood test results. He looked at Anthony and simply said, "I don't know how you're still alive." He explained that Anthony's potassium level was a 1.7.

 Here's the thing about potassium, from my very limited understanding: It is an electrolyte that, along with magnesium, controls the muscles in our bodies. Basically, magnesium relaxes muscles and potassium tightens them. There needs to be a proper balance of the two so we can tighten our muscles to move them and then relax them from that position. I don't know what they use to measure the levels, but a healthy range for potassium is right around 4. If it drops to a 3, doctors get nervous and you need intravenous potassium to raise the level. They had to balance my electrolytes a lot when I was pregnant because I kept losing them with my eight months of continual vomiting. When they had to replace potassium, they moved me to a wing where they could monitor my heart constantly because too much potassium too fast can be bad news for the heart.

 Here is what was happening to Anthony: His potassium level had dropped so low that he could no longer constrict his muscles: Here's why the doctor couldn't believe Anthony was still alive. The heart is a muscle, and it needs potassium to constrict and pump blood through the body. Without enough potassium the heart cannot beat.  Also, the diaphragm is a muscle, too. It needs potassium to move itself, and its movements are what move air into and out of our lungs. The fact that Anthony's heart was still beating and that he was still breathing was, again, nothing short of a miracle.

 They began pumping potassium into his IV immediately and transferred him to the ICU. Once he was settled and stabilized, or so we thought, I hurried home to check on Lana and grab a few things we'd want for a hospital stay - we didn't know how long we'd be there. Then I drove back to the hospital. As soon as I entered the ICU wing, Anthony's nurse came running towards me. "Before you go in," she said, "you need to be prepared. The situation has changed." Those are NOT the words you want to hear. I braced myself. She explained that despite the IV potassium, Anthony's levels were continuing to drop. His potassium was down to a 1.5. He was losing coherency and they couldn't get him to respond anymore. I made a quick translation in my mind: "We're losing him."

 I walked into that ICU room feeling numb. I think I was in a bit of shock. I couldn't process what I had been told. I pulled a chair close and gripped Anthony's limp hand. "I'm here," I said. He opened his eyes and focused briefly on me, and then he was gone again. I kept holding his hand, praying with no words, just the screaming of my heart. I didn't see any future, only that moment, trying desperately to hold him here. I've been in the hospital bed so many times and Anthony has always been the one in the chair. I never realized just how HARD it is to be in that chair.

 The ICU doctors and nurses knew the IV in Anthony's arm was insufficient. He needed more potassium and he needed it fast. The risk to his heart and life was far greater in his current state than if they rushed potassium into his body quickly. There was one way to do that - they needed a bigger vein, and one that went straight to his heart - they needed an IV in his neck. They had me leave the room for the procedure - it was very bloody. I called my sister as I waited; she is studying to become a paramedic, and her response was, "Oh, I am so jealous! I've always wanted to do one of those. I mean, sorry, this is hard, but it's also really cool." Some of the nurses thought so, too; apparently it is a rare thing.

 The day was late by then. Anthony was still unresponsive. I knew we'd be there overnight and there was no way I was leaving him. I called our home teacher and asked if he and his wife could stay at our home with Lana. They did and Lana took it all in stride. Later, they would tell me that they had had plans to go out that night, but as they were getting ready to leave they both felt strongly that they should cancel and stay home. It was less than half an hour later that I called. Another miracle.

 Anthony's nurse found the one and only reclining chair in the ICU and brought it into his room so I could sleep there. When I was in the ICU during my pregnancy, I couldn't have visitors, not even Anthony, unless my breathing tube was out and he stayed awake. I'd heard from other people that sleeping in an ICU room was not allowed. When I asked the nurse about it, she said that in some cases the patient did better with a loved one nearby. I think she also feared that those minutes might be the last I had with him. I thought about the possibility then, the possibility that Anthony might die - I forced myself to consider it. But something inside me firmly said, "NO." No, I wasn't going to lose him. Everything was going to be alright. And such a feeling of peace and calm filled me that I couldn't be afraid.

 We had more friends from church, more Priesthood holders, come to give Anthony a blessing of healing. Then the night began. The nurse would come and check on Anthony often; I woke up each time to see if there was any progress. Then it was Anthony's voice that woke me. He was awake; still paralyzed, but awake and alert. Over the next several hours he progressively got better. First, he could wiggle his toes and fingers. Then he could lift his hand off the bed,. He could scratch his own nose. He could move everything and, aside from the IV in his neck, he felt completely normal by about 4:00 a.m.

 He went back to sleep - a safe sleep now - and I wrote a few updates about his condition on Facebook so our families and friends would know. By morning, Anthony's potassium level was even a little high. He was transferred to another wing and discharged that afternoon.

 A follow-up visit with a specialist gave us the answer to why all this had happened. Anthony has a form of hyperthyroidism called Graves' Disease. Yeah, we'd never heard of it either. An overactive thyroid is common enough; Graves' Disease is one form with some specific symptoms. The word "disease" bugs us a little because it's not something you catch like the flu; it's just something your body does that is beyond your control. Anyway, when the thyroid is producing too much of its thyroid hormone it can deplete potassium, hence Anthony's low potassium level. The hypokalemic (low-potassium) paralysis is actually rather rare and usually only happens to Asian males (no idea why). Anthony is 1/4 Filipino and his doctor said that was Asian enough. Whatever the reason, the paralysis is periodic so we can expect it to happen again, only this time we know the warning signs. For now, Anthony takes and is weaning off of a beta-blocker to control his thyroid and has potassium pills he takes whenever he gets that sore, weak muscle warning sign.

  So we survived July with a reasonable co-pay for a very expensive hospital stay. (Anthony's bill was around $12K. I still take the cake with my month-long pregnancy bill of $160K.) We are so grateful for health insurance!

 Begin August. We had a family reunion planned with all five of my parents' children and families coming to visit. So, naturally, a couple days before relatives began arriving, our one and only car decided it needed more attention. (Seriously, this is one needy car.) It started to stink of gasoline fumes when I drove it and make some unpleasant grinding sound. Now I know pretty much nothing when it comes to cars, but even I realized that gasoline fumes and a hot engine in hot weather is bad news. So the car went to the shop. The told us what was wrong, I didn't understand a word of it, and it took time and $700 to fix. Joy. We had to borrow my parents' second car for nearly a week, including during the family reunion weekend.

 Lana loved having cousins around to play with. I don't think she understands what a cousin is, but she sure loved them. She is the youngest of my parents' seven grandchildren. She instantly took to her nine-year-old cousin Ciara, and followed her pretty much everywhere. We all went to OMSI (Oregon Museum of Science and... something that begins with an I) and Lana's favorite exhibit was of the dinosaurs. We enjoyed it, too - life-size moving models with lots of information. Apparently, now they have evidence that a lot of dinosaurs had feathers or even fur - they sure look different than the stuff I saw growing up. Every time Lana saw a new dinosaur she would make a very dramatic gasp. She started saying, "The dinosaur is very hungry." And maybe she was right., She also said, especially about the T-Rex, "It wants to hurt me." I was nervous about nightmares at that point, but our little girl is tough.

 Oh, and in the meantime, I'd seen a throat specialist because I'd had a terribly sore throat for weeks - I could barely swallow it was so painful. But it wasn't Strep and it wasn't Mono, and the specialist just said, "Hmm. I've never seen something like that before." He actually left the room for about fifteen minutes to do some research and came back saying, "Nope. No idea." Figures. I'm usually the medical anomaly. So, just to "see what happens," the specialist put me on amoxicillin, a strong antibiotic. If it was an infection it would clear up; if it really was Mono, I'd get a rash and then we'd know for sure. Because that's sound medical practice.
 Well, we got our car back, family went home, and I dutifully finished my whole course of antibiotics. Antibiotics always give me diarrhea and one or two other unpleasant symptoms. Only this time the diarrhea was another warning sign we didn't even know to watch for. After finishing the antibiotics, my throat pain came back, but it was nothing compared to the sudden onslaught of constant, hourly diarrhea and abdominal pain. I thought the diarrhea was leftover antibiotic fun, but the pain worried me. I was able to identify some of the pain as an ovarian cyst - I've had so many that I'm very familiar with the pain - and since it was on my last functioning ovary, we were a bit concerned.
 The pain escalated terribly and eventually it was my turn for an ER visit. (I couldn't let Anthony have all the fun.) There, they tried to get an IV to start hydrating me, as always, but they couldn't get one in. The diarrhea had dehydrated me so severely that it took more than a dozen painful needle pokes and wiggles before they had an IV. My arms and hands were bruised for weeks from all the veins they'd punctured. Then they sent me for an ultrasound to check on my ovary. Yes, there was a cyst right where I said it was. But it was a normal size, my ovary was a normal size, and the blood flow to my ovary looked fine, too.

 But I have a history, you see. Remember my pregnancy and that hyper-stimulated ovary? It had three enormous cysts (each 8 cm in diameter) and swelled to five times its normal size (15 cm - normal is 3 or so). And then it twisted - ovarian torsion - which cut off the blood supply to the organ so it died and became toxic, not to mention the most painful thing I have ever experienced. They had to do emergency surgery on me, seven months pregnant, to cut out the dead ovary. It has grown back since. Yeah, we didn't know that could happen either. So the doctors decided maybe they wanted to do surgery to look and "just check" that my ovary wasn't twisting. I said, "NO WAY!" I'd had an ovarian torsion before, I knew that pain, and this wasn't it. This pain spread across my whole abdomen, it was not an ovarian problem. They didn't believe me. We were at an impasse. I wouldn't let them do the surgery and they couldn't let me go home with my vitals the way they were. Oh, I forgot to mention my vitals. My blood pressure was super low and my heart rate was super fast, which basically meant my heart was working overtime trying to pump blood that just wasn't there.

 So they admitted me to the hospital with strict no food or liquid orders because they still wanted to do the surgery. I was starving and my mouth felt like sandpaper, but there was no way they were touching my ovary - it's our only chance of ever having another child, and even then it's not a good chance. They took more vitals, more blood for testing, and sample of my stool (ahem, diarrhea - I did not envy my nurse that job). A few hours later my doctor came by to let me know I'd tested positive for C. Diff. Yeah, we'd never heard of that either.

 C. Diff is, in my limited understanding, bacteria normally occurring, even in newborn colons. It's not nice bacteria, but our bodies have healthy bacteria in our colons that protect against it, so people can pick up the nasty bacteria and pass it through their systems without ever knowing it was there. But - there's always a but - IF a person's natural immunity and healthy bacteria are compromised, like what happens when on heavy antibiotics, and that person happens to come in contact with C. Diff., there is a 1 in 1000 chance that they will become very ill, and if not treated quickly and correctly the illness can be fatal,. And, of course, I am that 1 in 1000 people. It's impossible to know when or where a person picks up C. Diff. The bacteria creates airborne spores that attach to everything, clothes, skin, walls, etc., and can live for months or even years just waiting to be picked up. The only thing that can kill it is bleach. It is a big problem in hospitals because those airborne spores can travel on anyone, anywhere, try as they might to isolate an infected person. The alcohol hand sanitizer the nurses and doctors use whenever they enter your room can't kill C. Diff. (You feel safe now, don't you?)

 So, being that rare case, the theory is this: I spent time in the hospital with Anthony, picked up C. Diff. there, and then started antibiotics a couple days later, killing off my body's natural defenses. That gave C. Diff. the chance to essentially shred the lining of my colon and cause severe pain and diarrhea, and it had been doing this for weeks before we figured it out. Yay. To treat it meant more antibiotics, a few days in hospital attempting to rehydrate me, and then a lot of rest at home. I spent two whole weeks in bed, so exhausted I couldn't do anything but sleep because my body was fighting SO hard. Also, the disease and dehydration can cause bouts of incoherency or delirium, so there were many times that I'd stumble out of bed and do things I wouldn't remember, or make phone calls to people without making any sense, or have long conversations with Anthony with slurred speech and no coherency to what I was saying. I don't remember most of those weeks.

 Once again, our church stepped in quickly to help us. Anthony made one phone call and we had two weeks lined up so someone would take Lana to play at their house every morning while I slept - Anthony would use his lunch break to put her down for a nap, and I only had to be awake for an hour or so before he got home - and we had dinners delivered to us every night for those two weeks. The support we had was incredible. I don't know how we would have survived those weeks without it.

 Thus began September. Fall is coming, but our summer fun wasn't over yet. We needed one final hurrah, I guess. After the antibiotics for the C. Diff. were finished my body sort of over-corrected and I got constipation. Not for long though, because one evening I managed to push several inches of my colon outside my body. Yeah, we didn't know that could happen either. It's called a colon prolapse. I was panicking - who wouldn't? - and there was no way, given the situation, that I could sit in a car to go to a hospital. This time we had no choice but to call for an ambulance.

 It was our first experience with paramedics and an ambulance, and it was humiliating. Anthony, ever my hero, had managed to get me lying face-down on the floor with naught but a towel covering my rear end and, uh, problem. The ambulance came, lights, sirens, and all, along with a firetruck. Two very helpful paramedics and a whole truck full of very bored firemen crowded into my bedroom and I was in such an embarrassing situation. The female paramedic promised they'd try to preserve my decency as much as possible; "It's just me and a bunch of guys," she said, as if that was reassuring. It's a good thing I was face-down and never saw more than anyone's knees, because, although I'm sure they've seen worse, I wouldn't want to recognize their face if ever I saw them in public. You know that female fantasy of being rescued by a hot fireman and carried to safety? Well, I don't have that fantasy, but this was pretty much the worst way I can imagine meeting a fireman.

 The paramedics managed to slide a tarp beneath me and carry me out of the house, strap me onto a gurney, and get me into the ambulance. We'd had just enough time before they arrived to call my parents yet again to come stay with Lana. Once in the ambulance the paramedic began putting an IV in my arm. I said, "They could only use the smallest size in the hospital and it was really hard for them to find a vein." He pulled out a larger needle and simply replied, "That's because it wasn't me." One poke in a moving vehicle and I had my IV. I told my sister about it later because I knew it would make her proud.

 In the ER, in a lot of pain in case I failed to mention how painful a prolapsed colon is, the doctor explained that he could fix it easily. How? Push it back where it belongs. "It's going to hurt like hell," he told me, "but then it won't hurt anymore." I looked at Anthony, he gripped my hand, and I said, "Do it." It hurt like hell. The doctor asked if I felt better. Through clenched teeth I answered, "It's very hard to say." It still hurt like hell, but at least everything felt like it was where it should be. Some pain-killers for me and home we went. After the C. Diff. and the prolapse I was terrified of ever using the toilet again. I'm still working on that one, but I'm getting better.

 We expect more hospital bills and ambulance bills soon. I can't say we're excited because we have no way to pay them. We'd need another miracle for that one. But we are so, so grateful that we had access to health care when we needed it.

 That brings us up to date. Summer is finally ending. Anthony needs his potassium supplements less and less often. I'm recovering, albeit slowly, from my battle with C. Diff. I'm still exhausted just by walking from one end of our small house to the other, but hey, at least I'm out of bed. Recovery time varies and can sometimes take up to a year before a person feels "normal" again after C. Diff. We're at the one month mark, so I'm I'm trying to be forgiving of my invalidity and, while frustrated, I'm trying hard to be patient.

 Onward, onward to Autumn! With bills coming and no money to our names and enough trouble to last at least a year, we are praying this next season will be a bit kinder to us. Autumn has always been my favorite season - let's hope it continues to be so.

 It ain't over 'til it's over. When is summer over??

 After posting this, I began having severe abdominal pain. Three pains, specifically, two I could identify myself and one I couldn't. 1) on my left ovary is a cyst - painful but benign. It's a matter of waiting for it to resolve. 2) centrally, my intestines are still recovering from C. Diff. This process takes time - a lot of time and patience. 3) the unknown pain. Severe, and seemed to radiate down my entire right leg.

 I saw my Primary Care Physician first, thinking it might be related to C. Diff. somehow. She had me get an urgent blood draw, urine test, EKG, and full CT scan - to rule out appendicitis and/or a clot in my lungs. Fortunately, I had neither problem. Unfortunately, because the scan showed nothing wrong, my PCP then told me that the pain was being created by my mind and I really ought to get some help from the mental health department. She'd never heard of anything that could cause my entire leg to hurt like it did (therefore nothing could), and my scans were clean - nothing was wrong. I didn't believe her.

 I'm already working with a fantastic psychiatrist. He assured me this was not due to mental or emotional health - I was stressed, obviously, but coping pretty well. He even identified what could be causing my abdominal and leg pain - a tear or sprain in a specific muscle that starts exactly where my abdomen pain started and would easily affect joints on that leg, too. (MY PCP is definitely fired.)
 So I saw my most favorite doctor, my OB/GYN. Her answer: it's a pelvic floor muscle spasm (same as I had a year ago, only more severe) which has also pinched the nerves the psychiatrist mentioned so the pain radiates down my leg. Since it's a muscle spasm, the CT scan of course doesn't show anything wrong because the muscle is supposed to be there - it takes a knowledgeable exam by touch to assess it.  
 So now I have one more thing to recover from. Woot

Additionally, Anthony's last blood test showed his thyroid is still acting up and his potassium still drops too far too fast, but they're upping his meds so he'll be safe - we have to wait and see what the long-term solution will be.
 Any positive thoughts, prayers, empathy, or help would be so enormously appreciated right now. We need a new season, a fresh start, a season of rest. 

Leave your thoughts and comments please!