"Trust the Doctor"

LOOOONG story:

My husband went in for a Laparoscopic Nissen Fundoplication surgery. It was expected it would be 2-2.5 hours. I had my friend and her husband with me at the hospital because of my PTSD issues. Mike's parents also came and were a great support. At about 2 hours and 20 minutes after entering surgery, I got nervous. I knew it was just because I wanted him to be done and I had been too warm for too long. Nausea, dizziness, fatigue, vision, hearing, and feeling my extremities were all issues. I just wanted to see Mike and hear him.

After 3 hours they had finally finished. It went longer than expected. The surgeon met with us very quickly. "It was successful. Mike won't be able to drink or eat anything because they will do a scope the following morning to make sure everything looked okay." He showed a square of 4 in x 4 in saying it was a large hiatal hernia. I asked if all he used were stitches and he said Yes and then left in a hurry. When he left my friend said, "Well okay then!" and "He is young." The surgeon didn't spend much time, but he said the words I wanted to hear-it was successful.

We went up to the observation room he'd stay in for 24 hours and Mike was starting to come to. Everyone left and I figured all would be fine. However, shortly thereafter he threw up some blood. Then he screamed out in more pain than I've ever seen him in. More pain than he has ever felt. The nurse asked what he was feeling. He said, "Tearing. My lung feels like it's being torn open." He had incredible pain in his right lung. His blood pressure and heart rate were high (which is obviously to be expected. I knew that simply because of my own experiences), but the lung and chest pains weren't something I expected. The nurses were wonderful and I said it worried me. One nurse said, "Me too. I've never heard pain after surgery described like that." She told the doctor and he ordered an EKG and stat X-ray. They did an EKG and I watched it just like the others in the ER the few months before. Abnormal.

The surgeon came up and asked, "Michael, how do you feel?" He told him honestly, "I feel like my lung is being torn open." The surgeon said, "What did you expect? You just got out of surgery." The cardiologist came up. He saw the EKG and said, "Hmm.." He looked at the monitors. Hmmm. The cardiologist then compared the previous EKGs from the ER visit a few months earlier to the current one and said, "Oh, okay." He told the surgeon that he would have been much more concerned-in fact that he WAS concerned-because of the EKG and his stats. But since his other EKGs were the same (abnormal) and this one was the same (abnormal, but in the same way), that it should be okay. They would monitor him, though, because of his chest pain. I asked the doctors, "But, they said that his abnormal EKG was only because of his hiatal hernia. They thought it would get better after he had the surgery. Does that mean it is something else? His heart?" Our surgeon gave his second, "He JUST got out of surgery. What did you expect?"He walked out and I looked to the nurses. I explained that I was sorry that they had to do another test, but that I had been concerned. We didn't know what to expect. Both nurses said they were too. "You were okay to ask and don't worry about him. He is....he is that way. Always. The hardest to read" (other nurses on later shifts said the same thing and about his communication 'style').

Mike had his X-ray and the surgeon came back to say everything was normal. No problems. AGAIN he told us that he just got out of surgery. The pain is just the trapped gas bubbles. Part of surgery. (Granted, we weren't told what to expect at all)!

We figured it was no big deal and my concern was unfounded. I shook it off and took my place of silence. I acknowledged that my extra concern was probably just my heightened stress of PTSD. I was being ridiculous. Settle down.

But Mike didn't get better. We thought we'd be able to leave within 24 hours as predicted for this type of surgery. He was still struggling breathing on his own. His heart hurt pretty bad- even worse than his stomach and incision sites. Whenever he was alert enough, he made sure to walk often. His heart rate, blood pressure, temperature, and other stats would fluctuate between high and normal, but not extremely high. On their own it raised no flags, but together he was not good enough to go home. I asked a few questions, but was put in my place.

I shared an extra part of our struggles with others via email or fb and several voiced their thoughts that we should just "trust the doctor" and that none of it was a big deal. I know it was to calm me, but instead it rattled me. Granted, I was running on a lot of pain and very little sleep. I started having flashbacks of a couple really, really hard times in my past where I did trust doctors and shoved that inner voice down. By the 2nd or 3rd day, I became more and more concerned. Why was he still unable to breathe on his own? Why is he still so lethargic? Why was he still so pale? How is he getting just a little worse and worse? I didn't VOICE these, but I did wonder and asked a few questions leading to answer these. I am familiar with recovery from surgery and most of these are common. But there was this gnawing feeling that there is more and the surgeon's dismissive attitude and lack of communicating ANYTHING at all was not something I should just sit back and watch.

I know most people have great experiences with doctors and surgeons. I am SO glad that is the case. But when my stress level was too high, sleep was low, pain was high, patience ran low, and PTSD was high, I started listening more to my gut than the doctor.

Let me tell you where TRUSTING DOCTORS got me:

• REMEMBER THAT TIME I STARTED TO DIE? --->A doctor put me on a prescription that interacted with another I'd been on for years. My pharmacist twice said he didn't want to give it to me and to ask the doctor about possible interactions. The doctor waved off my question and said everything was fine. Instead, month after month, he actually increased the dosage. I got to the point where I twitched on the floor, collapsed at work, became home-bound, and couldn't stand more than 2 minutes without passing out or vomiting. My intestines completely shut down. Bleeding over my kidney with bruises that looked like someone took a bat to my back. My doctor thought someone was abusing me. He didn't listen. I ended up in the hospital after 3 days of slurred speech, and then my eyes rolling back in my head and unable to stand. In time I came to and they brushed it off. The pharmacist's words that I'd forgotten about many months before kept running through my head. The day after the ER, I was crawling down the hall to take my meds and that warning I'd received came to me. I decided to NOT listen to my doctor. It took a few months, but I improved. LATER, when I got a new doctor and she saw how HIGH the dosage was on this new medication, she was appalled. Horrified, actually. Come to find out, I was experiencing SEROTONIN SYNDROME and was closer to death or coma than I'd realized. Granted, I felt like I was dying and had prayed for 3 days, "Heal me or Kill me," over and over to God. But, I hadn't realized WHY. My intestines have never been the same.
• REMEMBER THAT TIME I WAS IN LABOR FOR ALMOST 6 DAYS? --->The first time I went to my OBGYN appointment, I met with the nurse practitioner. I didn't have a good feeling and felt like I should get a different doctor. I was talked out of it, though, because I hadn't actually met the doctor. He was recommended by so many. Fast forward 8ish months, around my original due date (later they changed my due date, by a month, when they measured my baby in my ultrasound. But according to timing the due date was right on)......... My OBGYN thought I had a kidney stone, not that I was in labor. I mentioned that my mom only felt back labor and my sister only progressed with pitocin. What if I was the same? Why were they monitoring me on the front if my pain was in the back? The nurse came back to say, 'He says it's fine.' I went back to teach and still felt pretty bad. But, I can push through quite a bit. I called to say the kidney stone hadn't passed and pain increased. Doctor said, "Drink more fluids." Called the second day that the kidney stone still hadn't passed. "Drink more liquids." This had gone on since Wednesday night/ Thursday morning. It was now Saturday. I lost control of my bladder and was leaking. Kidney stones really do hurt and they seem to last for a long time. Sunday I had reached my limit. I hadn't slept since Thursday early morning. I called the OBGYN and still was told, it's just a kidney stone. I prayed for relief and felt that I should actually get a second opinion. I got in with an Urologist on Monday. He was shocked---Your OBGYN didn't do an ultrasound to see the kidney stone? No. You thought you lost control of your bladder? Yes. The urologist scheduled an ultra sound. There was NO inflammation. NO kidney stone. I hadn't lost control of my bladder, but had been leaking out amniotic fluid this whole time. I didn't need more liquids and Depends diapers. I needed the hospital. I had been in labor that whole time. We went to the hospital and I called the OBGYN AGAIN. Even though I'd called earlier that day, he was "in a meeting." His message via his nurse was, "I wasn't in labor, but if I wanted to, I was free to go to the hospital for them to tell me it was just a kidney stone." I got to the hospital and amniotic fluid was found. The doctor didn't believe them. "It could have been on the nurse's gloves from before." The nurses were flabbergasted. He demanded 3 tests. The OBGYN on call did the tests. I had almost NO amniotic fluid left except for 2 tiny pockets on one side. I was at risk. I was put on pitocin for THIRTY hours. Since my uterus was exhausted from working for so many days, I only progressed to a 5. I finally had a C-section and had my daughter Tuesday night. I was in labor for almost 6 days. All the nurses came in to see "that couple," and joked that I had the cutest 7 pound kidney stone they'd ever seen. I finished teaching that school year, and a day or two later, had a surgery to fix my issues from that horrible labor. 
• REMEMBER THAT TIME I HAD A MINOR BRAIN SURGERY AND WOKE UP THINKING THEY WERE KILLING ME? THEN EVERYTHING BECAME 100000000xs WORSE?---> I was so hopeful about my Radio Frequency Lesioning for my Trigeminal Neuralgia. As I was discussing it with my neurologist, I had a quick feeling of "Oh no. Don't do it." But, I brushed it aside. NOTHING could be worse than TN. If medication had failed and this was the last ditch effort, let's do it. I CRIED because I was so happy that there was actually hope of relief. I had the surgery and everything got SO much worse. The issues I have now from waking up screaming and crying, begging them to stop, and the anesthesiologist unsuccessfully being able to put me under from that moment on remind me the issues I have from NOT being heard. 
• REMEMBER HOW I HAD ANESTHESIA DOLOROSA AND INFECTIONS THROUGHOUT MY BODY LANDING ME IN THE HOSPITAL FOR 4 DAYS? --> Immediately after my surgery I got a cough and burning in my lips. Then stinging in my tongue. I emailed the neurosurgeon (my chart) and said my lips burned. I was told it should go away and to take Tylenol. The next day I emailed again that the Tylenol wasn't enough and what to do about the stabbing pain in my ear. I was told to take EXTRA strength Tylenol. And see my family practitioner about the ear. I called my fam doctor and couldn't see her for 2 weeks. Saw the Quick care doc and was put on a small round of steroids. Asked about what I do when I need another round, since I ALWAYS need extra rounds. Told to wait a week and then call. The next week I passed out twice, had a fever so bad I had to be covered in ice packs to stay conscious, and decided I would be happy to die. My husband and I both thought that I should go to the ER, but I reassured him I was fine. Two days later my fever was better and I went for my followup with the neurosurgeon. Almost 103 temp, sent down to the ER, and had pneumonia, UTI, sinus infection and possibly meningitis (but the cocky doc in training wouldn't listen to me and failed at getting the spinal tap all the way). I had anesthesia dolorosa, they could no longer help me with surgeries (I had 2 more set up), and was in the hospital for 4 days. 

Needless to say, I've gotten to the point that if I have a question, concern, or thought, I've learned to speak up. I SHOULD speak up. But I questioned my thoughts because I'm a bit on the fragile side since my surgery. I knew that some of my own past experiences cast a shadow on my current experience. But, shouldn't I speak up and ask if we are being told NOTHING? Especially if I feel that the doctor/surgeon/nurse is being dismissive. I kept dismissing my gnawing feeling that they were missing something with my husband's recovery because of my own weird hospital issues. Eventually, though, I decided that I'd had enough silence. 

Anyway, I started asking that they monitor him more. They were monitoring every 2 hours. But it was just a snapshot and I could tell when he started getting a little off. He didn't say anything or really look that different, but in that moment I wanted him monitored. This time I insisted that they check him and keep him monitored. That was when they realized that his blood pressure was all over and that cardiology actually shouldn't have given the all clear. They called the surgeon back and did another EKG. It was abnormal, just like all of his others. They checked everything and did another EKG longer, while keeping his bp, heart rate, and oxygen levels monitored. They realized what the issues were and finally were willing to discuss treating it. He was put on blood pressure medication and they finally recognized that his issues were bp + hiatal hernia. I had been VERY frustrated because right after his first EKG (waking up with surgery) they put him on bp medication. That was when his chest pain finally dissipated. But in time, the chest pain returned and then he got worse and worse. They didn't put him on the medication again and wouldn't discuss the idea that any heart issues were needed to monitor.

With his first response to the bp meds and the abnormal EKGs after surgery, I thought we figured out the last piece of the puzzle. They didn't think so and how dare I think that I could ask questions.

Couple that with my inability to walk easily, feel my feet for 6 days, hands for 2, vision and hearing messed up, so sick that I'm in the bathroom for half an hour, stabbing pains from Hades, sleep for only 1-2 hours for 2 days, nausea, dizziness, fatigue, and pain throughout my body....I reached my limit. I broke down feeling a weight of anxiety past my limit as too many reminders of my own experiences in the hospital crept up, the inability for my hubby to communicate with me much, and feeling so dang disabled. Thankfully there were so many intervening angels who saved the day. Many wrote messages of love and support on fb or text. My dear friends drove me back and forth so I could shower and get clothes. (Because every day they thought he'd improve and we could go home. But each day he wouldn't improve, they had no answers, and that was that.) Several stopped by to simply check in, give me food, give Mike a blessing, and help me through small bouts of PTSD.

Thursday night they wanted to move us to another floor. We were only supposed to be in observation for 24 hours. Instead we had been there for more than 3 days. Nurses who returned were shocked to still see us there. That evening there were no available beds. But in the morning they would move us because we were expected to be there until at least Saturday. Again, no one told us this until the nurses were changing shifts. Every piece of information we got about how Mike was doing or the treatment plan was through a nurse shift change and their report to each other.

It was that afternoon/evening that they put Mike on regular bp medication. Our dear friend also came to give an anointed blessing. About an hour later his stats had gotten just a bit worse (fever, oxygen) and I had some hesitations. But, once they had decided that he needed bp medication that nagging feeling inside that something was off had disappeared. I also knew he'd received a priesthood blessing that was positive. I no longer felt like I had to speak up about something. So, I went home to sleep. By the time I returned at 6:45 a.m. Mike was smiling. He was finally looking like himself. He was no longer pale, lethargic, or having chest pains. Everyone who saw him from then on commented on how much better he looked. Finally. 4 days.

Instead of moving us up to another floor, they decided he had improved so well that we could go home instead.

We asked a few questions of the surgeon.
He can return to work? 2 weeks
Wait, he can lift 50 pounds at work, always on his feet... TWO weeks. 


Okay, okay, no more questions.

The nurses were more helpful and sent us home with paperwork that answered a few questions we had (which would have been great to have from day 1, since our surgeon didn't tell us anything). It recommended two weeks of liquid diet and his body seems to respond much better to this than solids. I still worry a lot about him going back to work in 2 weeks and lifting so much. But, apparently doctor knows best. =)

Mike is allergic to one pain medication and when I went to pick it up, the pharmacist voiced concern (flashback to my doctor who almost killed me and my pharmacist was cautious-eventually being the one who saved me). This pharmacist said the one pain prescription the surgeon had prescribed was in the same 'family' as this medication. Mike tried it for a day and after the weird things he experienced, he decided they weren't worth it. It is funny that the pain in the areas where the surgery were done aren't that painful. The pain is still in his heart. He feels like something is grinding in his heart. ALWAYS.

I'm grateful for the help, love, support, prayers, and blessings so many people gave. I know everyone truly wanted the best for us and were hoping to relieve the stress Mike and I were feeling. I KNEW it wasn't a life or death situation by ANY means. I knew in the end everything would be okay. But, I also knew that we needed extra help. He didn't recover like a normal patient and I am very grateful for all the doctors, nurses, and medical knowledge available. I'm just really glad we got out Friday afternoon instead of dragging it out longer and longer. My heart goes out to the many, many people who are suffering so much more in and out of hospitals in more dire circumstances. =( And I truly am grateful for wonderful medical professionals. I am NOT saying that this surgeon was horrible by any means. But, the lack of communication was frustrating. I also just wanted to answer all the questions we'd received in one loooooong blog post. It's simply easier that way since I'm limited in talking.

Thanks for the prayers, texts, fasting, blessings, meals, drives back and forth and back and forth and ... THANK YOU!

*********** UPDATE:

Mike lost 20 pounds in 2 weeks. (11+% of his body weight). He needed rest from the bed to the couch. His fatigue was like mine- Train Wreck Fatigue. Pure exhaustion, ESPECIALLY after he ate. If he ate more than 1/2 cup of food with 2 sips of water, he would vomit. By 4 weeks he had lost almost 15% of his body weight. It has been 8.5 weeks since his surgery and he still can't eat more than 1 cup of food per meal. He can't even eat 1/2 cup of thicker foods like mashed potatoes. He hates eating. But his weight has finally stabilized. His heart also stopped grinding and he doesn't need the beta blockers. =) He has had a cough for more than 4 weeks, though. =(

Surgery Short Version

Short story:

Hubby went in for surgery on a very significant hiatal hernia, as recommended by 3 surgeons. Took 3 hours. Woke up vomiting blood and feeling like his right lung was being ripped open. Surgeon's favorite response after any question (even the one HE asked) or concern was raised: "What did you expect? You just had surgery." EKG done and was abnormal (cardiologist called up and said he was concerned until he saw his previous EKGs). Put on one dose of blood pressure medication (temporary). Were not told EKG was abnormal, but that it was normal. Had an X-ray that showed partially collapsed lung. Were not told it was abnormal in anyway. I suspected both were abnormal, but I was put in my place for even asking about the test results. ZERO communication about what was happening, what the test results were, what to expect, or any answers to any questions. The following day I asked very pointedly what the test results really showed and why did he still have trouble breathing? Or why were other stats still high and he wasn't improving? Finally told, "Well, yes, there was a partially collapsed lung but it's normal after this surgery." By the second day, the surgeon stopped being so mean with his "It's just recovery. What did you expect" response, but still didn't communicate. The cardiologist had decided it had nothing to do with their specialty and handed it back to the surgeon. However, the surgeon couldn't say why things weren't improving. I didn't ask much and figured it was just an extra day of healing. However, something in me said they were missing the last piece of his puzzle. At this point I didn't think Mike was DYING. There were many more severe cases throughout the hospital. HOWEVER, it mattered to us. OBVIOUSLY everything wasn't fine/normal as the surgeon flippantly declared several times OR we would have left as expected days earlier.

Mike continued to struggle breathing, had a higher heart rate, blood pressure, temperature, and chest pain, but not severe enough on their own to raise red flags. Each day we were told we should go home the next day. But he wasn't improving and instead continued getting a little worse and worse. After 2 days we were told we would have to move rooms and HOPEFULLY would leave in 2 more days-Saturday instead of Wednesday. By day 3, I was frustrated with the surgeon's lack of communication, my husband's lack of improvement, and my anxiety started climbing as memories of my own experiences with dismissive doctors creeped in. I had shared updates with others and prayers increased. I shared a bit more information with others via email, although I was running on little sleep, poor health, and interrupted communication with our phones. I know everyone I communicated with cared and wanted the best for us. Mike and I had concern and anxiety, so I reached out for support and extra love. (My love language, and help with peace, is through words of affirmation. Mike was so out of it that I had to turn to many others at that time. I felt like I wasn't being heard in the hospital-which was VERY much my issue with waking up in my own surgery earlier this year).  There were several who recommended just trusting the doctor and stepping back. I believe I could have relaxed if the doctor had communicated from the beginning. On the night of the 3rd day, Mike got an anointed blessing and I stopped trusting the doctor blindly. Instead, I asked MORE questions and asked for MORE monitoring. I shared my own thoughts instead of staying quiet. They learned that his blood pressure was up and down too much and finally put him on bp medication consistently. It was then that cardiologists were asked BACK on his case. He finally had no chest pain regularly, could breathe on his own, and stats went back to normal. He was no longer pale, lethargic, or out of it. There were many who were incredibly supportive! They brought meals, answered questions the surgeon wouldn't take time to do, drove me back and forth so I could take a shower, called or texted love and support, and encouraged me to share my thoughts with the doctors and nurses. (Bless nurses and medical professional friends we can trust!) Mike and I both have had excellent doctors, more specifically surgeons, and nurses. BUT, sometimes you have to speak up and not just silence the voice inside screaming for you to speak up. It is funny how time seems to slow down in hospitals. I knew in the end Mike would be fine. But it is hard to feel like your voice is negated and things aren't being taken seriously. To many others it wasn't a big deal. But, to us it was a big deal. I appreciated those who listened to us, and let me cry some, lean on them, and gave of themselves what we needed and couldn't do on our own.

Now his pain is really just in his heart. He feels like something is grinding in there. You would think it would be the incision sites or where most of the surgery happened. But, it's not. Surgeon and Cardiologist say it's fine. I'm hopeful that he will improve and we have an appointment this week with the family doctor.

Saturday Song*Spiration *STITCHES*

While I haven't been able to really sing for a year, I still love music. I listen to it almost daily and especially have grown to love music videos. I am particularly drawn to certain ones that better emulate the emotions or experiences of my new life.

I LOVE Shawn Mendes' STITCHES video!! Love, love, love. I try to explain how I feel with Trigeminal Neuralgia, my surgery, and Anesthesia Dolorosa, but I know it all gets jumbled. I'm a visual learner so I like how his video shows the invisible aspect of the torturous assaults to my body.

TRIGEMINAL NEURALGIA (and OCCIPITAL) with the invisible punches. 

ANESTHESIA DOLOROSA with the slamming of his face into a car window. (Except imagine it's happening over and over and over, along with a blow torch, battery acid, knives, sledge hammer, bugs, and an evil dentist with his torture devices. haha)

The part where he is dragged back to the car to have his face smashed in reminds me SO much of being wheeled down the hallway after waking up in surgery. I could hear everything and was completely aware, but I had to work hard to open my eyes and mouth. It was after these movements and moments that the anesthesia dolorosa hit me. Over and over. "Needle and the thread, gotta get you out of my head" makes me think of waking up on the surgical table feeling the needle and burning in my face and skull. I jerked my head and screamed for them to stop. I felt the needle come out and yet felt the sensation as if it was still in. But the lasting effects that stayed with me are the true torture. Gotta get it out of my head in more than just a literal sense of the statement. My husband goes in for surgery in about a week and my PTSD is rearing its ugly head. Thankfully I'm working through it and feel better prepared. (ish)

The message itself may not be specifically relatable to my situation, but the visual is poignant. I also love some of the lines. OH how applicable! {I substituted Trigeminal Neuralgia (TN), Anesthesia Dolorosa (AD), my surgery, hope of relief, and other aspects of my struggles into parts of his lyrics that fit me better}.

"I thought that I've been hurt before {TN, ON, MS, Fibromyalgia, labor for 6 days, gall bladder, cysts on ovaries bursting, arm broken at 10 yrs old with 2 nurses who broke it back into place and then breaking again later that year, concussion, serotonin syndrome, car accident, and emotional pain all pale in comparison to AD}
But {nothing's} ever left me quite this sore
Your {surgery} cut deeper than a knife
Now I need someone to breathe me back to life

Got a feeling that I'm going under {after I woke up they tried to put me under, but I could still talk. After I spoke up and started moving myself from the surgical table to the gurney, they put me under more. I fought to open my eyes and mouth and was able to do so in a short amount of time. They tried another medication but I didn't go under at all}
But I know that I'll make it out alive
If I quit calling you my {hope}
Move on

You watch me {cry} until I can't breathe
I'm shaking falling onto my knees
And now that I'm without your {relief}
I'll be needing stitches {figurative}
I'm tripping over myself
I'm aching begging you to come help
And now that I'm without your {relief}
I'll be needing stitches

Just like a moth drawn to a flame {all my attempts to deal with Trigeminal Neuralgia}
Oh you lured me in I couldn't sense the pain
Your bitter heart cold to the touch {suicidal, working SO hard to stay alive and find happiness}
Now I'm gonna reap what I sew
I'm left seeing red on my own

Got a feeling that I'm going under
But I know that I'll make it out alive
If I quit calling you my {hope}
Move on

Needle and the thread

Gotta get you out of my head
Needle and the thread...
Gonna wind up dead...

Gonna wind up dead

Needle and the thread

Gotta get you out of my head

Get you out of my head

You watch me {cry} until I can't breathe
I'm shaking falling onto my knees 
And now that I'm without your {relief}
I'll be needing stitches {figurative} 
I'm tripping over myself
I'm aching begging you to come help 

And now that I'm without your {hope}
I'll be needing stitches {figurative}

At the end, I LOVE how he washes off his scars, blood, and pain and looks up with a healed face. Scars gone. I feel like that will be me at the resurrection. Healed. 

https://www.youtube.com/watch?v=VbfpW0pbvaU

I may be struggling more these days as my body has built up a tolerance to my medications. But I've decided to document the things I'm feeling and what I've experienced to look back on. I am still doing much better than I was the first 2 months after my surgery.

I view my "stitches" as the gifts, cards, messages, texts, comments here, and love that you all have given me. I have not found hope in the medical world lately. My last several doctors' visits left me with little hope. They don't have much more they can do and simple comments of, "We HOPE it goes away or lessens," and "Sorry I can't do much of anything to help," left me a tad empty. But, thankfully it's not all I've put my hope into. <3 <3 <3

I've never smelled a rose

The idiom, "Stop and smell the roses," has always been lost on me.

I was born without a real sense of smell. I used to joke that my Mom had an amazing sniffer and a horrible memory while my Dad had a horrible sense of smell and an amazing memory. I got jipped because I got the bad nose and the bad memory.

I didn't realize how many things smelled until I lived with a roommate who commented on smells she loved. Most people don't talk about their love for so many smells.
Rain smells?
Dirt and grass? Are they good or bad smells?
Skunks and Tuna Fish doNOT smell the same to everyone? (They do to my dad and me. I only know it is a skunk if I'm on the road and tuna fish is in the kitchen. If there was ever a skunk in a kitchen, it would entirely throw me off).

Flowers, however, I knew smelled. I've just never smelled one. Sometimes I ask people to describe smells, but usually it just falls flat. I'm okay with it because I've never known anything different.

Some say it's a blessing and others call it a curse. Some may add it to my list of disabilities. I just call it a lack of whiff-ability. However, apparently there is a legitimate medical term for being born without a real sense of smell. A sickness led me to a fantastic ENT (and office staff) who led me to the real term:

Congenital Anosmia

{Side note: Now that my face has changed, it's harder for me to feel how much my sinus infections have progressed. Recently I could feel a sinus infection coming on and unsuccessfully tried getting in with my family doctor. I didn't want it to progress quickly and follow the same path of Urgent Care doctor--> minimal prescription--> "wait a week"--> admitted to the hospital with a failed lumbar puncture and 4 days of IV steroids/antibiotics, like last time. The increase in pressure is also much harder on me with anesthesia dolorosa. Thankfully, I got in with a wonderful ENT (and amazing nurses/assistants) and got it cleared up quickly. My first visit was a bit of a blur. I had flashbacks from waking up in my surgery because I did a CT scan before I met with the doctor. I cried silently and swiftly wiped away my tears. But I couldn't stop shaking. It was hard to focus on the doctor. He showed me I have a deviated septum and even though he didn't mention surgery at all, my mind immediately went there. Nooooo. I also mentioned that I didn't hear as well out of my right ear after my surgery. I didn't delve into the details, because honestly I just wanted to leave the office (PTSD).

Immediately after my minor brain surgery I felt like an ice pick was being shoved down my ear. I couldn't hear as well and always felt like I needed to pop my ear. When I'd visited the Urgent Care for my cough, the week after surgery, she mentioned that I had a Eustachian tube dysfunction and it should return to normal after my sickness passed. (The next week I had developed pneumonia, UTI, and a sinus infection, which led me to a relaxing, extended stay at the KU hospital. At the time I only knew I had a cough and couldn't tell the other infections spread. I get sinus infections several times every year, but all I knew after the surgery was that I coughed and passed out a few times. Oh, and I was slowly being tortured to death. But the regular ol' sinus infection wasn't anywhere near my radar).

My sickness passed, but the need to pop my ear lasted for about 6 months. (It popped for a minute or two on the airplane in March, but didn't last). In that amount of time my hearing has come back, but not fully. I worry with MS exacerbations that new issues become permanent disabilities. I always have buzzing/ringing in my ears (19 years) and when my MS gets worse, my hearing can come and go or the ringing increases significantly in either ear. However, since my surgery it is primarily in my right ear.

Thankfully my incredible ENT scheduled a hearing test and a follow up. Even though I struggled a bit, it was nothing compared to the first visit. I met some awesome workers and found that my left ear is EXCEPTIONAL and my right ear is VERY GOOD. Both are in great range, but my right is slightly less perceptive. My right ear used to be my better ear, but because of my MS and worse neuralgia on that side, it is the one that reacts worse. My pains have simply increased and it's just a small part of it all. Nevertheless, I found out my deviated septum is not significant, it isn't related to my lack of smell, and there's a name for my sad lil sniffer.}

Are side notes allowed to be that LOOOONG?


Lately I've been a bit obsessed with BUTTERFLIES. I've joked that I'm in my cocoon phase. I started as more of a caterpillar. Too many rolls and at first glance it looks like I have a few too many legs (with my walker). And then my failed little surgery put me in a dark place with a whole lot of transformation. I haven't escaped yet or risen in the least. But, I like the idea that I can morph into something beautiful. Eventually.

I can't smell the roses and I've been forced to STOP more times than I'd like to count. But at least I can look for the roses and find the incredible creatures God had created as a reminder that darkness lifts, beauty prevails, and we will eventually rise.

Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.      

Nathaniel Hawthorne

Adding wings to caterpillars does not create butterflies, it creates awkward and dysfunctional caterpillars. Butterflies are created through transformation. 

The butterfly counts not months but moments, and has time enough.
What the caterpillar calls the end of the world the master calls a butterfly.

Sometimes the WRONG one is the RIGHT one to lead you to the BEST one

I was an "older" single in Utah and remember one fireside in particular. My friends and I came earlier so we could have good seats. Later, an older lady sat next to me and right before it started, an usher came to say, "Can you move? There isn't enough room for this woman's husband." I was just a single, so moving me was easier than an older lady WITH someone. She needed the softer seat, so I moved, but I did it begrudgingly. I sat by myself and felt alone.

John Bytheway and his wife were speaking at the fireside (meeting). He had been single well past his peers and some people were critical. He was doing the best he could to progress, with one aspect of progression being building a family. But, he hadn't found his eternal companion yet. He had prayed along the way and sometimes dated girls where it didn't work out. He was so confused because he had felt good about the different relationships at the time.

Then he said, "Sometimes the WRONG one is the RIGHT one to lead you to the BEST one."

{This is NOT to say that disobeying a commandment or doing wrong will lead us to good. "Wickedness never was happiness." Some people will date someone who isn't good for them or we simply make wrong choices that go against God's counsel. Later we are surprised to realize the depth of consequences from our negative choices. We've all done it, learn from it, and move forward if we look above for assistance, input, and if necessary, repentance & forgiveness.}

This statement by John Bytheway has run through my head too much the past year. We did NOT even make $20,000 last year. Before starting school, jobs were not working out (except for a few that would mean not doing school or one that required Mike being gone from 7:30 a.m. to midnight every day/night. He had to quit because of my health issues, though). We felt strongly that Mike should do the intensive school program. There were a few times we questioned our inspirations and the ability for us to survive for a whole year. Since it was a technical college, they had limited funds and other establishments wouldn't loan anything additional. It left us with only $770/mo from August to May. I'm really good with money, but no magician. In time we felt strongly that somehow it would work out.  It took another huge leap of faith, especially because the previous two years resulted in frighteningly bad finances and struggles. In 2015, there were several months were we didn't make any money and even one job where Mike got less than $4/hr. On top of the lack of funds, we had 4 robberies, 2 ER visits, a "Peeping Tom," frightening & confusing health problems for both of us, often two house payments, and no help from several people/places that usually help others in need. There were months where we brought in nothing: $0/mo income, no food stamps, no unemployment, no bishop's storehouse, no health insurance, or anything else despite our applications and requests as there were many delays. {Thankfully there were some friends and family who were inspired and we were blessed step by step.} So, obviously this move forward into school without a job scared us that it would be another 2 steps shoved backwards just like the years before had turned out to be.

At this point in my life I should be confident in the inspirations I've received and know that doubt often follows powerful promptings. I knew I'd been inspired down to small details throughout my life and even knew when things would be hard. However, they were always much, much harder than I ever expected. For example, when we were looking at homes to buy, with our excellent credit score, savings, and job, we qualified for a home twice the amount of the one we chose. I felt that we should choose a much cheaper, older, smaller home than the ones we'd been exploring. I was inspired to know that the home would be okay for us, but that I'd hate it the second year of ownership. I imagined a few thousand dollars being sunk by bad plumbing or electrical issues. If ONLY it were a few thousand dollars! It was so much worse than I imagined. But, in the end, it was okay. Another time, I remember crying and crying when the railroad called back four months after furlough. I explained my fears and feelings that by the time we returned to Kansas, we would have given up a good job and would be furloughed again before working one single day. The night we pulled into our driveway, back at our rental, we learned that he had in fact been furloughed right before his shift. The first furlough with the railroad put hundreds out of a job. This time they furloughed thousands across the nation. Sadly, the job we left in Idaho was no longer available, either.

Joining the railroad felt so right, and yet it was the worst financial decision we had ever made. WHY did we feel so good about it when it went so horribly wrong?

It took me a while before I found the positive blessings hidden behind wretched fears and struggles.

We learned a great deal of compassion and understanding for others struggling. There are so many in the world who were in a much more tragic and dire situation than us. We were not starving, living on the streets, or in a war-torn country, absolutely alone, or entirely hopeless. There were others we knew needed more help than our little family in the middle of the USA.

Each time I thought we'd maxed out our blessings and credit cards, I was surprised to find we had just enough intervention to carry on.

We learned what matters most and if we lost every physical thing, we would be a-okay.

I had help weekly with my worsening health and my husband's intense schedule.

We learned God is aware of us and others are incredibly inspired. I learned I was loved and not forgotten.

We learned to acknowledge our weaknesses, ask for help, and to fully accept service. {SO much easier to give than receive, honestly}.

My husband and I are quite nonjudgemental, but I learned that we still had some judgements and assumptions that were narrow minded with regard to employment, resources, and a few extra limitations.

The most dramatic twist of fate in our path of survival was our journey of jobs. In 2014, my husband's company's health coverage was significantly worse than previous years. As my health worsened, so did our finances. My husband always wanted to have rentals and drive trains. He got both dreams and so much more...or less. =) A 'bad' job (poor coverage and not enough pay or opportunities to move up) led to the WORST job (Union Pacific) that was the RIGHT job to lead us to the BEST job and path of education. The struggles led to re-evaluation of our occupational path and taught my hubby that he can be successful in intensive training and testing. Before the railroad, we'd talked about education and possible opportunities. Dead-end jobs pushed us to so many more opportunities and open doors.

Before my husband completed his 48 credit hours (in TWO semesters with all A's and one B), he had multiple job offers. He decided on one job of the three offered. THIRTY minutes after he decided which job to take, the Union Pacific called to take him off furlough! Years after furlough, the timing was impeccable. We moved forward with the job that had good pay and the easiest opportunity to continue education. In one year we had gone through the darkest tunnel of our lives and came out the other side to the light. We saw the beautifully orchestrated outcome of hard work, sacrifice, inspiration, and especially intervention.

Stumbling through the dark tunnel as you chase the elusive light at the end is usually when change happens. Sporadic glimmers of light give a dull glow that keeps you moving forward, but sometimes feeling your way through the rough path makes you think that you are alone. It isn't until the end, that you see you weren't alone. None of us are alone. The darkness can be suffocating and even painful in every way possible. But thank HEAVENS for the LIGHT of the WORLD!

I am so grateful for those who lent their lights to me, those who lifted me when I'd fallen, and helped make the past year of education and now the BEST job we've ever had become a reality. When you're in the middle of trials it seems as though it will never end. But, thankfully as long as we continually turn to God, He can make the seemingly impossible, POSSIBLE.

Bless you all for being my BEST supporters. <3 <3 <3

Can I have FAITH and NOT be healed? Does God still LOVE me?

I'm not one of those people who thinks you have to say *just* the right thing to me. If your words tumble out in an awkward mess about my suffering or diseases, I'm just happy you thought of me. Some people have said some crazy things to me regarding my Anesthesia Dolorosa, but I know their intentions are wonderful. Plus, I forget things like you wouldn't believe and words squirt out of my mouth faster than I can suck them back in. I fumble, jumble, grumble and bumble. It takes a lot to offend me and heck, I might even forget it entirely. So never worry about saying or asking the right/wrong thing. I'm an open book these days with thick skin if you don't count the right side of my face and head. haha

But one woman's words struck me to the core of my soul and rattled me weak and broken. She had the BEST intentions in the world. (I have NO bad feelings towards her, btw--> not now and not then).

She and another gal were visiting me even though she knew I was struggling talking. They brought us yummy food and talked for a bit. The woman's first language was not English, so I wasn't sure if she quite understood everything in my situation. She did, to an extent, because she too had Trigeminal Neuralgia. Her story was much shorter than mine and was like most wherein she visited with a neurologist once and was put on 1-2 anti-seizure medications and has had no problems since. She pulled out her two prescription bottles. I had to tell her 3 times that I had tried one of them but my body rejected it and the other one I was currently on (at a much higher dose and several others). I explained that I'm glad her neurologist was good, but I already had TWO neurologists AND a neurosurgeon. (Many people don't understand that what I have is 100000000000000000000000000 times worse than TN-the suicide disease). I love connecting with others who have one of my many diseases-there's a sisterhood in finding someone who has dealt with some of the same pains and struggles. I cried a little but told her how grateful I was that she found relief and was one of those who doesn't have to suffer anymore. She recommended I pray.

The part that struck my heart like a machete, Thor's hammer, the black plague, and a harpoon was when she said, "I asked my husband WHY did I get this miracle? Why was it all taken away? I thought I was going to die and now I don't." Her husband said, "You got a miracle because God loves you."

"...because God LOVES YOU."

I couldn't hold back my tears, but hugged, said good-bye, and sucked in my breath in hopes of keeping the floodgates in until they reached their car. I felt like my breath had been taken away and replaced with rancid poison. (Can poison become rancid?)

I crumbled to the floor and sobbed, bawled, screamed, and howled all at once. I banged my fists against my tingly, weak legs and didn't care how many knives, electric bolts, bugs, punches, scorpion stings, burning, or pounding happened in my face or head. I already wanted to die every minute of every day. Why in the world would it be so in my face (pun intended) that I wasn't healed?

There are very few times in my life that I have grieved so harshly and loudly. Usually my jerk reaction is to numb myself with chocolate, a movie, or sleep until I could regain my composure/strength. This time, though, I went to the scriptures. I read over and over about Christ begging God if there was any other way. He asked 3 times.

Some people have told me that I don't have enough faith or I'm not thinking positively enough. Now, I'm not equating my struggle to Christ's because I know it PALES in comparison. But, Christ fell on his face and pled with his Father in Heaven for relief. And He did not get it. Instead he suffered even MORE. I looked up the apostle Paul (Saul) and his "thorn" in his flesh that would not depart despite his pleas 3 times. He continued on ward despite being imprisoned 2 times, ship wrecked 3 times, stoned, 5 times whipped with 39 stripes, 3 times beaten by rods, faced robbers & conniving people, suffered hunger, thirst, homelessness, sleeplessness, cold, and eventually martyred.

Was God's response cruel? Did He not love Paul or Christ or anyone else who has begged and pleaded and NOT been healed? Did God abandon those who suffered endlessly and only visit those he loved (as evidenced by their 'thorns' or diseases being taken away)? Should any of them have prayed MORE? (**Three is symbolic Biblically as WHOLE or COMPLETE. Often times it is used as a figurative number instead of a literal number. It may literally have been 3 times, but it may have been many more than that. 3 decades? 3 stages of rising and falling hope? Hope, crushed hope, rising hope, shattered hope, baby-step hope, asteroid fallen hope? 3 missions? 3 parts of the night? Either way, I don't know for sure.**)

God said, "My GRACE is sufficient for thee" (I feel like a failure mom and wife at times. But if I keep God as my companion, His grace will make up the difference. As all 3 of us raise my daughter (husband, me, and God), she will become her best self. I don't have to do it all on my own.)

He continued, "My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am WEAK, then am I STRONG."

I never understood this like I did that day on my knees. First I feel in utter and complete sorrow crushed by the weight of my burdens. Next I prayed, read, prayed, and read until I understood that God DOES love me EVEN when he does NOT heal me.

I am the WEAKEST I have ever been in my life. I was the weakest physically, emotionally, spiritually, and mentally. And yet these incessant pains are teaching me a lot about myself, my strength, and God's power. I'm learning that I HAVE to take time for myself and heal instead of just deal. I cannot run faster than I'm able. (Ahem, I haven't been able to run for 19 years or half of my life, but you get the sentiment). I'm talking to God even more than I ever have before. I've had a very close relationship with God and Christ from a VERY young age. But, this depth of pain has also brought about a depth of closeness and connection that I haven't had before. While I do NOT rejoice in this AT ALL-bless your heart Paul-I do rejoice in the connections I've made with friends, family, and my Father in Heaven.

I still have pains each day that are unbearable. I still have nightmares or PTSD triggers from waking up in my little brain surgery. I still can't do many things without pain. I still mourn the days when I could talk, laugh, and smile whenever and however much I wanted to. Whether I was in a bed, wheelchair, country across the world from my home, or mountain top--->I miss that. Truthfully I may never (in this life) be able to talk, eat, sing, laugh, smile, brush my teeth, shower, etc without paying for it and being forced to stop. But, for better or for worse my pains are reminding me to turn PAIN into POWER and to really look to who has ALL POWER. And that is becoming a strength in my weakness.

I have a new SUPER POWER!

I don't mean to brag or anything, but I have a new super power. You know how super heroes often gain their powers through a freak accident? Yeah, that's pretty much me.

What is my magnificent power, you ask??

-->I can tell time withOUT a watch or being outside!<--

Okay, so I can only tell time with 6 pm and 9 pm., but I can still tell you when 6 or 9 are near. I could be in a movie theater or a bunker and every single day I could tell you when it's getting close to 6 or 9 p.m.

Bam.

Mind blown? (haha-pun intended)

I mean, don't be jealous or anything, but it's a new thing I can do. My husband says if he ever becomes a super hero his special gift will be that he can see the color orange REALLY well. I mean, all shades of orange with exquisite clarity. Pretty sure we'd be a powerhouse couple. Not quite sure which villain we could conquer but I'm almost positive it will be epic. ish.

It's been 15 weeks since my failed little brain surgery. You know how you start counting babies' lives in days, then weeks, then months...and then years? I'm still at the counting-by-weeks stage of counting the successes and changes, but I'm close to counting by months. I'm continually learning new limitations and every time I think I've figured out the right medication, sleep, talking, outside time, & rest schedules, I get hit with a whammy of a day and have to re-evaluate. With MS I had to do this a lot, but there are a lot more components this time. I may do well with 10 hours of sleep, smile only 5 times, talk 10 minutes spaced through the day, scratch my itchy face 3 times, space out when I shower and brush my teeth, take my meds 6 times a day on the dot, but get up and down too much and pay for it dearly.

But, I'm learning and repeat constantly, turn pain into POWER.

Here are the things that are changing/improving (as long as I don't do too much, make sure to sleep enough, and stay up on my anti seizure meds):

• I have minimal pains in the morning until 10 a.m. Depending on what I did the day (or 3 days before), I can even have minimal pains until 11 a.m. Sleep is a huge deal. 
• I still have that spot by my right temple that gets super cold whenever I drink or eat something cold, even mildly cold. Sometimes I do it just to remind myself that it's healing. It may be healing in a very odd way, but it's changing.
• I still always feel like I need root canals on 8-10 of my teeth, have a horrible ear infection, always need to 'pop' my right ear, sensation of bugs crawling under my skin, and am in an unquenchable fire with knives and electric bolts...but I'm not as bad until about 5 pm. The intensity is usually bearable, depending on what I've done. I actually feel like I can live this way until evening time hits. Then this Cinderella turns into a pumpkin. Stroke o' 6!
• My thyroid was the most inflamed it's ever been and had attached to surrounding tissues. Thankfully my nodules (growths) have stabilized some. ...so, I don't have to have another biopsy for now. =) WHOOP. WHOOP! Swallowing and pain are still an issue, but it's improving some.
• I can talk some at night now. FOR REALS. I still have to be super careful and if I talked too much in the day, then I can't much. My husband and daughter have learned some sign language and we use my notebook less. 
• I have been able to drive to some appointments on my own. Bless this weather and modern medicine. (And your prayers)
• My pains get quite bad around 6 and 9 and I can't seem to get my anti seizure meds strong enough or early enough to stop it before it's bad. But, I can live with it. We are now at the point (between my neurosurgeon, 2 neurologists, and I) where we are staying at the doses of all medications. My neurosurgeon also went into more detail of just how RARE it is that I have anesthesia dolorosa after this particular surgery. The 0.8% AD, I mentioned before, is usually with the surgeries where they completely kill the nerve. Go figure my body is THAT sensitive and RARE. He didn't have figures on how many actually develop AD with radio frequency lesioning of the TN, but I'm the first he's ever known. I feel like I should have earned a sticker or a sucker for my good behavior and survival, but instead he walked out with my old CBD spray bottle. =) He has recommended CBD to several, but I'm the first to follow through and experiment with various brands and types. So he was really grateful to have my information and recommendations. 

I think the BIGGEST improvement or 'blessing' of anesthesia dolorosa is that I am learning what works and what doesn't. I'm learning even more than ever before what my body needs and my motivation has never been higher to do what is best for my body. Before there were so many factors that came into play when I tried something new. (Medication, alternative approach, schedule, positive thinking, etc). It's easier for someone to say they cured MS, headaches/migraines, fatigue, weakness, colds, pain, etc. with this or that. Double blind studies on lifestyle changes aren't found too often for a variety of reasons. Many people shout claims of cures purely on anecdotal evidence, especially when it comes to my various diseases. But, I can tell you if something works or not based on how bad the electric jolts buckle my body in half.

I have found these things help the absolute most (physically speaking and in this order):

1. Anti seizure medications
2. Priesthood and Prayers
3. CBD (spray with peppermint)
4. Massages, chiropractor, and other stress reducing practices
5. Counseling/Meditation/Tapping/Alternative stuff

I am not to the point of saying I'm GRATEFUL for anesthesia dolorosa and Occipital and Trigeminal neuralgia. NOT YET. BUT, I am grateful for what it's teaching me. I am putting my health as top priority and doing all I can to make the pains lessen. EVERYTHING!!! Before when I just had my 7 diseases (MS specifically), if I got less sleep, was up and down too much, or got too hot, I'd pay for it. But, it wasn't earth shattering every day. I would get extreme fatigue, nausea, dizziness, loss of vision, hearing, diarrhea, and weakness, but I had learned to deal with that. My health was a priority, but not top. I have always tried to push myself past the point of exhaustion. Now I'm so desperate that I have so little desire to do things that aren't great for my body. If I get too little sleep, I pay for it so severely that I commit to not let that happen again. I used to worry about everyone else's comfort before my own-even strangers. Now I'm learning to do what is best for me apologetically. I guess if you want a cure for being a people pleaser, I found a solution. Step one-wake up in the middle of a minimally invasive brain surgery; #2-get your brain to not understand numbness and lesions in the nerves. #3-you might be cured. haha. OR just learn from me that while you shouldn't toss your kids and hubs to the wayside, you should put your health as a priority. Especially before you get to a point of no return. 

ONE day 

OR 

DAY one

You decide.