Today is the 2 year anniversary of my hernia surgery. I had been suffering from a right, femoral hernia for about two years and I kept thinking the pain would go away. The summer before my surgery, the pain got so bad that I had to use my grandmother’s old walkers to get around. I was READY to have the surgery. It was supposed to be no big deal, laparoscopic, the surgeon had done “hundreds of them.” Overall, my health was good, I was young, it was an uncomplicated procedure done by an experienced physician. I really didn’t think that much could go wrong. If anything, I figured a problem with anesthesia could be the only complication. As it happens, the anesthesia went very well. However, the moment I opened my eyes in the recovery room, I knew that something was wrong.
Me, right before they wheeled me back 8-31-2016
Unfortunately, the searing, burning pain and the shocks of what felt like lightening through my core, are very much imprinted in my memory. I asked the nurse immediately to please call my doctor, something was WRONG. Hazily, I saw her make the phone call, shake her head, and hang up. She returned to my bedside and said that the doc wouldn’t be coming. I should take my Percocet and motrin and go home.
It’s a LONG ordeal to describe, so I’ll hit the highlights. I had urgent follow-up appointments, ct scans, drainage of a hematoma that they thought might be causing a problem (it wasn’t), in and out of the ER, admitted to the hospital multiple times, more procedures, work ups, etc. My surgeon said that my insurance wouldn’t cover anything in terms of a revision for at least 6 months. He couldn’t fix anything that went wrong, for half a year. He told me to go find my own pain specialist until the 6 month mark. That was it. I was curled in a ball, in the bed all day every day. Intermittent fever, couldn’t walk without crutches because of the pain, sit in a chair, go to the bathroom, or sleep. I knew I couldn’t make it 6 months.
Finally, I called the surgeon’s office and explained that something HAD to happen, he had to see me, DO something- I couldn’t live like that. They called me back and oh so benevolently, admitted me to the hospital- without decent orders for over the weekend. I lay in the bed, in a ball, shaking from pain. I had a fever. One young nurse cried and left the room- she wouldn’t take care of me any more because she couldn’t hold it together. An older male nurse came and stood by my side- I was in a haze, but at some point he stormed out saying “this just isn’t right!”. There was nothing that they could do to alleviate my pain- my physician was gone for the weekend and hadn’t left instructions for adequate care. They weren’t able to get an IV in, because I was so dehydrated from being denied water for so long. James was working, and I retreated into a bubble, mentally. I prayed over and over, nothing intelligible, just begging for mercy. Then, I heard voices- a song.
“Thank you for being a frieeeend!! Travel down the road and back again…”
My dear, wonderful friends from high school completely shocked me and all came to the hospital (one lived in New York, one in Miami, one in Atlanta) for a surprise visit. They were singing the theme song from the Golden Girls as they entered the room. My angels had arrived! They went to bat for me and very long story short-they got a wheelchair and busted me out of there like it was Alcatraz! One of them drove me to the hospital where James was on call and I was admitted there for the weekend, with the intention of getting a direct transfer to Emory on Monday. They took great care of me, and it took until Tuesday, but I made it up to Emory. I sat in a triage room for 13 hours. THIRTEEN. That’s not an exaggeration. My mom came up to meet me there, and I remember the immense relief we both felt when they finally got me to my room, at 4am.
My prayers were answered when my dear, loyal friends came and helped me. I prayed that there would be no complications getting me admitted, and although it took FOREVER, I will never forget the feeling of relief when I fell asleep that first night. I was scared, but I felt like I was in the right place. Surely, they could fix me.
The rest of the story is to be continued… Sometimes, people have the privilege of hearing God answer their prayers in the moment and other times, it’s only evident what was happening in hindsight. Still in others, it doesn’t make sense at all on this side of Heaven. I can honestly say that all three have applied to me throughout this journey.
Today also happens to be the Feast of St. Aidan! August 31st was a day worth celebrating in our home, for the past decade. St. Aidan is the patron saint of firefighters, and my oldest son’s name means “fiery one.” It could not describe him more perfectly. St. Aidan was an Irish monk and missionary, who spread Christianity to all of northern England in the 7th century. He travelled without ceasing during his lifetime, spreading the Gospel to everyone from the upper classes, to children and slaves.
Recent pic of Aidan
We like to acknowledge and honor each one of the children’s saints- whether from their first name, middle, or birthday. It’s so sweet how each of them feels a kinship with these special souls throughout history, who loved our Lord. We tell stories about St. Rose of Lima, and St. Matthew the Apostle. Not gonna lie- St. Nicholas day might be everyone’s favorite because we do the traditional gifts, which include the all-important chocolate!!!
Earlier in the week, Aidan asked me what we were going to do for “our” special day. August 31 will always be significant to me. Best way I can think to describe it is, it’s a second birthday. The new “me” was born that day. My life changed, drastically, and I will never be the same. I’ve told friends and strangers alike that I feel like George Bailey, in It’s a Wonderful Life. I’ve been given a second chance to live my life- that seemed ordinary before, but now, everything is in Technicolor. EVERYTHING is brighter, sweeter, a privilege. I was driving to the grocery store with the kids in the car, and I had a migraine the other day. I thought “oh, I wish it would go away, I want to feel fine.” Then it hit me- I’m driving a car! Taking care of my own children with no help! Going to the grocery store to buy food to cook! I didn’t do ANY of those things for well over a year. Over. A. Year. I’m lucky enough to grocery shop with a migraine! All of a sudden, my mood lifted and I started to sing along with the radio with true joy.
My “bad” day was what I had only dreamed about a year ago. What a blessing a grocery trip can be. Cleaning up a spilled sippy cup isn’t a burden because my legs used to be so weak I couldn’t squat and then stand back up. I couldn’t hold my daughter in the bathtub, couldn’t rock her to sleep. Now, if she pops up at 2am, I relish the chance to hold her close and rock away. Yes, August 31 is a big day for us. My oldest son’s namesake, and my second birthday. It IS a wonderful life!
I’ve had so many stories, thoughts and experiences that I wanted to share, but our laptop was on the fritz. I’ve tried to get the kids to be more tech savvy and losing Google Chrome was the result of them having more computer time! I have no idea where it went, or why it doesn’t work anymore. I’ll figure that out later! I wrote something a while back, in the midst of a season of change. I’m still in that season. I feel like, for two years, I’ve been redefining who I am and what my role is every single day. I’m trying to find my footing so to speak, and it’s a lot harder than I thought it would be. Trials change you. You can’t walk through fire without getting burned, and I did. Badly. But the wounds healed slllooooowly. Veeeeeery slowly. The change was imperceptible from day to day. The only time I realized it was when I looked back. Where was I a few months ago? Where am I now? It wasn’t a giant boom, I didn’t wake up one day and shout “I’m healed!” What a cool story that would have been, right? No, it was gradual, and it’s still happening. I’m a work in progress.
This is what I wrote back in May:
A lot has happened around here over the last few months! I keep telling myself I will write when I feel better and have the spare time. I’ve been putting off making phone calls to make vacation plans for the summer, and procrastinating about seeing a doctor whom I like a great deal- but I want to feel even better when he sees me again. Sometimes I have a very good reason for putting off plans or items on a to-do list, but frequently it’s an overall attitude of “when my life is perfect, then I will do it!” (whatever “it” is). I think that part of that mindset stems from fear- fear that has been so deeply imbedded in my soul for so long, it’s hard to break free from it completely. I always hold back some- will I get too tired? Will I make pain worse? Will I commit to something and then disappoint loved ones? The past two years have been traumatic for me, and I can’t deny that they have left an indelible mark in my mind. How will I choose to use this experience? These memories?
The past few months have been a leap of faith for me, and a process of letting go of fear even more. I had been on nerve pain medication (Lyrica or Neurontin) as well as pain medication (fentanyl, oxycodone, etc.) for a year and a half. I tried over half a dozen other medications as well, and suffered through every awful side effect that came in tiny print, in the little booklet from the pharmacist. My body lost all muscle, appetite, I lost a third of my body weight, and my hair thinned a lot. I always knew that the medications were temporary, and I was very hard on myself for taking anything for pain. I carried a lot of guilt over that. My dear friend Kathleen told me at the beginning, “Amy, you can worry about pain, or medication. Pick one, not both.” So, I picked pain and took the meds that my kind, conservative pain management doctor said would help.
The timeline to come off of everything was all my idea. Once we FINALLY found the right combo of interventional procedures like nerve blocks and injections, I was SO ready to be done with the meds that had allowed me to have some sanity in the midst of great pain. I cannot put into words just how awful that part has been! Fentanyl withdrawal is a special kind of torture. That was last year. The past three months I stopped the last of the nerve pain meds and oral pain medication. I even stopped motrin, because of nausea all of the time. I still had chronic pain every day when I stopped taking meds, so I think of it as a leap of faith- faith that everything would be ok, and I would be strong enough to handle life with some pain. After the first two months passed, my nervous system calmed down a lot. There’s a long, technical explanation for that, that I understand, but I won’t explain fully, since it might bore everyone!
I finally have an appetite! I would literally lie in my bed, curled in a ball, and think of all of the foods that I would eat one day, when the nausea was gone. Krispy Kreme topped the list- every time! I did research, James did, my parents did- everyone was so supportive about this next phase of trying to get my overall health back. Not gonna lie- it’s been brutal. B-R-U-T-A-L. I read that the hardest part of stopping any substance that the body is used to, is the mental battle. People use the substance as a crutch of some sort. I know how blessed I am to say that I never had that battle. At all. I have experienced every physical symptom of tolerance and withdrawal, but zero mental symptoms. I give God 100% of the credit there. Everyone has struggles in life, and I don’t think that I am better than anyone who did have to struggle with addiction.
While I am SO glad that this particular struggle is behind me, I am grateful to have gone through it. Yes, I actually said that. I have a deeper understanding of people who have addictions, and who are afraid to live their lives without a crutch. I am less judgmental- I never realized that I was before! Oh, my heart goes out to people who have to suffer through the physical symptoms that I did, AND fight a mental battle as well. If I could wrap my arms around someone suffering right now, I would do it. One of my favorite docs told me that I didn’t have the cravings or miss the meds because I didn’t let them become part of my identity. They, along with many, many interventional procedures, were a means to an end and not who I am.
Every day, I have some symptom- something that reminds me that I’m not perfectly well. Like the thorn in Paul’s side, it’s always there. I put off doing a lot of things for the past few months, because at first, I was dealing with withdrawal and increased pain while my nerves adjusted. Then, I felt weak because I hadn’t eaten well or exercised for years. Yep, that would sideline just about anyone. Daily, I started to obsess over small improvements and mark my existence and my success by how my body felt or looked. I realized last week (yeah, it took me that long!) that I had made physical well-being an “idol” in my life. I don’t think that wanting to feel healthy and strong is bad, not at all. However, obsessing over it and thinking that life will “begin” when everything is perfect- that is wrong. I failed to appreciate the progress I had made, because I was always looking on the horizon for something better. Anything can become an idol, and frequently, it’s something that appears to be good and just. Who doesn’t want to feel good? Ok, another question- who has perfect health? Hmm… Silence.
No one has perfect health, and I’m not sure why I kept thinking that it was an attainable goal. These mortal bodies are just that- fallible, fragile, and will not last forever. If I set my sights on things above, our Lord’s steadfast love, and I search for contentment in my soul, then anything that comes my way in life won’t knock me down. Like a strong wave crashing onto the beach- did you ever walk out into the surf at the beach as a child, and let the waves hit you? Sometimes they can knock you down, but usually, if you know just when to jump, they break and you are still standing. When you are lying in bed at night, after a day at the beach, sometimes you still have the sensation of waves hitting you…but you are snug in bed, and not being rocked by the ocean anymore. The waves have left their mark.
I looked at James the other day and told him I was just going to embrace whatever came my way- good or bad, but I didn’t want to wait anymore to enjoy things. I can lie beside little Lana and admire her profile and her little dimpled cheeks, even if I’m dizzy or tired. I can laugh, hard, even if I’m sore. You’ve heard the phrase “progress over perfection”? I lost sight of that. I am incredibly grateful for the progress that I have made. I will focus on that, and I’m not going to wait to celebrate anything.
Around here, we have a bit of a Star Wars obsession. It happened by accident. All of my kids had seen bits and pieces of the original trilogy, but it wasn’t until Eli the Wildman, my 3 year old, saw it, that a love was born. He was two and a half at the time. He saw Star Wars, A New Hope IV, and he LOVED it. His favorite character is Darth Vader, everyone else is just a distraction. Star Wars and its role in our daily lives deserves its own post! The rest of the children have seen the movies now, because of Eli. I was sitting with them one day recently, and they asked in their sweet childish wonder, “Momma, is the Dark Side stronger than the good side? Is it stronger than the light?” I think I stole the answer from Yoda, when I answered, “No, but it’s easier to follow.” Oh, how that simple statement affected me. I thought back, to a year ago, when I felt a pull to the “Dark Side.” Seems a little silly to make the analogy to Star Wars, but it makes sense, in a weird way!
This time last year, I was in Michigan. I had confirmed nerve damage, and constant, burning pain in addition to decreased motor function of that nerve. A doctor in Royal Oak, Michigan was world-renowned for his use of neuromodulators in patients with chronic pelvic pain. Long story- very long story, but I ended up choosing to see him and try a new model of device. It did not have a box to be implanted, like every other neuromod on the market. After the mesh debacle, the idea of having a foreign object in my body, and having surgeons tunnel to attach leads to my spine, gave me a panic attack- literally. The new device did not involve tunneling and the leads were the size of a spaghetti noodle. The “box”, or controller, would be worn outside of my body on a belt, and the whole thing was wireless. It took James and I three days to drive up there, because I couldn’t ride in the car for too long without a lot of pain. I laid the seat back flat, and had ice packs covering me. I was on fentanyl, lyrica or gabapentin, and other meds to control the unceasing agony. I do not use that word lightly. It was agony.
James flew back home after my initial surgery to have the small leads placed, and my mom and Aunt Janet flew up to stay with me during the trial period. What should have been a few days, turned into a month. It coincided with Lent. We used the time the best we could, and read our daily offices out of the 1928 Book of Common Prayer, read the Bible, said Hail Mary’s and I also read about the lives of saints. I have a diary from this time, and photos as well. It is so painful to remember- I could write for hours. Every day, I awoke, hoping that the device would work- I would be able to see SOME difference in the pain level. Instead, the pain was unchanged, and actually increased at times. I called the doctor and the device rep often to check in. I was completely honest in my review of the symptoms, but they kept telling me “it takes time to work.” I was determined to tough it out, certain that if I was brave enough and persevered, I would be rewarded in the end. Just give it time, Amy- again and again and again.
I was away from my children for a month. I missed my baby girl crawling, babbling little words, I missed ballgames, tears, laughing, dinners, hugs… I lived in a bubble, in our airbnb’s for a month. It cost a small fortune, and each day brought renewed hope, and then frustration at the end of it. We prayed for hours each day. Hours. I begged the Lord for guidance, not just healing, but wisdom to know what path to take. When you have a neuromodulator implanted, it is a trial period to begin with. Then, you have to decide if you want the final device- if you have seen at least 50% improvement. I knew I was one of the first people to receive it, what I did not know, was that I was the THIRD person, and the second woman… and that it hadn’t worked for the first woman. Wish that detail had been mentioned. All of my hope was riding on this working. I had already tried numerous treatments, and they all failed.
Through the haze of very heavy medication and pain, I was trying to discern the “why” in all of it. What was the reason for all of this? If I prayed enough, said the right things, would that equal the desired result? Was this suffering all for a lesson I needed to learn, and when I “got it”, the suffering would end? Guys, my head was foggy, fuzzy, and I had not had a “good” day, in 8 months. I was grasping for answers and a plan and for everything to make sense. I missed my children and husband for a month, but it was all going to be worth it because I grew in my faith, and came home healed. That was my plan. Every day, I sunk further and further down in mood because none of that was happening. I had more questions after praying so much, not fewer. The pain muddled any clear thoughts I had.
The morning came for me to decide whether or not to get the final device. My mom and my aunt drove me to the hospital. I remember being in so much pain, I was curled in the fetal position on the floor of the waiting room- in a haze. The doctor called me back, and asked if I wanted to get the final device. He said, again, it just takes time. I blamed myself for being impatient- maybe it was my fault, I hadn’t waited long enough to see progress. I didn’t want the entire month to have been a waste of time and money, so I said, “yes.” The doctor, who I really liked (despite a difficult trial) suggested EMG testing on the nerve while I was under anesthesia. The pudendal nerve has sensory as well as motor function. He knew that the sensory part was stimulated at a certain level (Hertz, etc. on the device), but they hadn’t checked the motor part of the nerve. I had been running the device between 10-14 per the doctor’s instructions, for three weeks. When I woke up, he entered the room and explained that the EMG tests showed I should never have run the device over a level 1! I had overstimulated the nerve for weeks, and caused more pain. Just like I described, multiple times. The final lead was placed directly on the nerve, and I was assured that if I ran the device on the correct level, I would see pain relief. It was practically certain. Phew! I was so relieved- still in a haze of pain, but with renewed hope. My perseverance had paid off!
My mom and my aunt flew home, and James flew up. He drove me back down to GA, this time in only two days. When he arrived, I was afraid to tell him that I didn’t feel any relief yet, like I had been promised. Actually, I felt worse, again. The car ride home was tense because I was trying to act like I was better, but I could barely put a sentence together. James figured out that I was hiding a tremendous amount of pain, and to say that he was disappointed, is a vast understatement. I can’t imagine what went through his mind. He hadn’t seen the wife he knew and loved for way more than a month- I had become a different person. We had held out so much hope that the “old” me would return. He was noticeably angry and upset. Our drive into town coincided with the Wednesday of Holy Week. My children had created a 40 foot banner for my return! I thought I would be driving up to the house, triumphant, just in time for Easter. My own, personal, renewal and triumph. I had pictured this moment a thousand times. I hobbled out of the car, and gritted my teeth through hugs and some tears. The rest of that day is a blur. I was asked a hundred times how much better are you? Is it working? When can you do ___?
I awoke the next morning, Maundy Thursday, and called my doctor in Michigan. I told him not to count my experience as a success. It wasn’t working AT ALL, I had followed every instruction, perfectly, done everything they asked, and patience did not pay off. I was in more pain, and I had wasted a month of my life for nothing. He was alarmed and asked me to go get an x-ray, asap. Why? What’s the point now, I thought? James took me to an outpatient center that morning. By that evening we had the results- the lead the surgeon had placed on my nerve had migrated, immediately after the surgery. There’s only a 6% chance of that happening… so a 94% of success. I was in the 6%. I went to bed that night, feeling somewhat vindicated, but mostly hopeless. I awoke the morning of Good Friday 2017, feeling different than I ever have in my entire life.
The irony and importance of the date was not lost on me at all. In fact, I think that added to the pain. I had expected to return home- having beaten my circumstances, just in time for Easter. A rebirth! A new beginning, a new hope. Instead, I was more broken than ever. The morning of Good Friday, I felt pain the likes of which I have had never known before or since. It was a void in my soul. Physical pain, I knew well, but this new sensation was foreign to me. It was as if a limb had been amputated. I lost God- in my mind I had. I tried to speak to Him, and the words wouldn’t form in my mouth. I couldn’t feel God, at all. I can’t describe this adequately. I do not think that you need to physically “feel” connected to the Lord- like all warm and fuzzy all of the time. I knew that. But that day, I felt like I had lost my best friend, he had died and I would never see him again. I felt abandoned- an emptiness that was SO painful, it was actually worse than the physical agony. I had read that Mother Teresa also felt that way, for years. An absence. She pushed onward in her faith, but she described an absence of the Holy Spirit- or the perception of one, in her life. I was numb. James was numb. Exhausted. We had done everything “right” and nothing had gone according to plan.
If I had to pinpoint rock bottom, Good Friday 2017 would be it. There were many physically painful times, but that day, I felt pain in my soul. I literally had no idea what to do, how to go on living. Without God, what was the point? Oh, that day, that one day. I will never forget feeling so alone, while being surrounded by people who loved me. It would have been so easy to give in, to dwell in the darkness and wallow in self-pity at that point. The darkness was pulling me, I felt it. “Give up, He doesn’t care about you” was the voice I heard that day. I wanted to curse the Lord- full honesty here. I prayed and begged and went through SO much pain, for nothing??! I limped through Good Friday, and woke the next day, still lost. Easter morning, I woke up, and at first, I went through the motions. I forced a smile at breakfast, I tried to listen at church. There was still that nagging voice in my head, telling me to give up. I still felt a void- that’s the only way I can think of to describe it- a hole inside of me. Easter day, I started to push back- it was so hard. You would think, for a lifetime churchgoer, I could just pick myself back up and move on. I had wonderful support and love, but darkness is very tempting. It pulled HARD.
I had to make a choice- do I fight back? or give in? Slowly, not overnight, I found my voice again. I told God that I didn’t understand, but that I couldn’t bear to live without Him. Life without faith was worse than any physical pain I could endure. I needed God in my life. So, day by day, I trudged along limping honestly, literally and figuratively. Some lessons in life are REALLY hard to learn- for me, trying to make sense of things is my hubris. I think if I can be logical and come up with a reason, then suffering will make sense. Ok- I admit right now, I have been so wrong. I will never, ever understand all suffering, maybe any at all. Follow that line of thinking to its conclusion- do the right things, say the right things, and you get the desired result? So, what, all of those people who continue to suffer, just didn’t have the right answers? No, of course not. This world doesn’t make sense to me, and I don’t think it is supposed to. It’s only on the other side- in the world of eternity where God exists, no past, present or future- he is everywhere, that pieces of a puzzle will fall into place.
In hindsight, I have the luxury of having my mind back! No haze of medications cloud my thoughts right now. I can appreciate the experience that I had during Lent 2017 in a fresh light. I spent so much time with my mother and my godmother, my Aunt Janet. I heard plenty of stories that I had never heard before about their lives. We prayed together, daily and I even had visitors! We had lived in that area of Michigan for James’s fellowship for one year. Dear, sweet women who I only knew briefly, all came to see me and encourage me. My family from Savannah took turns coming up to help my dad and James take care of 6 little children. I have no idea how clean my house was or what they ate, but you know what? The earth kept turning without me here, telling everyone to eat their vegetables and wear appropriate shoes. I witnessed love on such a scale, I am humbled and almost embarassed because I feel like an inadequate recipient. People from our church cooked meals for us, for a YEAR. I have one friend who brought us food every Tuesday for OVER A YEAR. It was, and is hard for me, to be on the receiving end of charity. None of us will ever be worthy on our own merit, of God’s mercy; accepting and truly needing SO much help during a difficult time taught me humility that otherwise, I don’t know that I would have ever possessed.
Last year, what was supposed to be my triumpant return, was the exact opposite. I arrived home more broken down and feeling a pull on my soul to give up my faith. Talk about kicking someone when they are down. It was the single darkest time of my life, Good Friday. Not by my own strength, but by God’s mercy, did he pull harder towards the light. I made a choice, to step out when I couldn’t see 6 inches in front of my face it was so dark. Choosing faith, and living in the light can be harder in times of great trial, but that’s when it’s the most important. Take that Darth Vader!
The epilogue to this story is that I had to go back to Michigan, lying flat in the car, surrounded by ice packs. I had yet another surgery, and woke up only to find out that the doctor took 10 tries to place the lead perfectly. (I have 10 scars to prove it) I had complications, and had to be admitted, after 9 hours in the PACU. My room wasn’t private, and my roomate had C. dif. I’m not kidding. Everyone wore hazmat suits but me. They gave her a bucket to go to the bathroom in, if she couldn’t make it to the toilet. The room smelled of excrement, and I was hooked to the bed with catheters and i.v. lines. I lay there in the dark, in more pain, crying, thinking “ok, seriously, the next time I say ‘things can’t get any worse’ someone just slap me!”. I eventually made it home, and the device never worked. After all of that effort, I never saw any relief. Because of what happened in my case, they now do EMG testing on both sensory and motor functions of the nerve while people are under anesthesia, and they place the lead in a different place to reduce the risk of migration. So, if stimwave works for anyone out there, you’re welcome! I got to be the guinea pig. Oh well!
Around here, we have decorated the house with heart streamers, artwork brought home from preschool, and homemade cards from the past couple of weeks. This time last year, I was in a haze, bedridden, and barely functioning. This year, I am in a better place, but I am by no means “supermom.” There are no elaborate meal plans, homemade valentines for each classmate, rhyming hand-painted cards, etc. For Lent, I had the best of intentions. I wanted to make a Lenten calendar for the family, with cut out crosses or symbols for each day to mark our progress through this church season. I would have loved to have special Christian books for each child, to guide them in an age appropriate way. We have a tree, with ornaments that correspond to Bible verses, that lead up to Easter. It’s in the basement somewhere.
Comparison is the thief of joy, and unfortunately I let it steal my joy from time to time. It’s easy to look around at other families and think that they “do” more than I do. I can look back at my own life and compare where I am now, to where I was then. I had the energy to cook more, and buy the supplies for elaborate crafts for each season/holiday. This year, I managed to get each child’s class some valentine’s from Oriental Trading Company. I got the sale items, and not the $8/child soft friends holding various flavors of chocolate! For Lent, I do not have anything special around the house- no calendar, special new books, or great plans to obtain either item.
This year, we celebrated Valentine’s Day a day early, on Shrove Tuesday. I wanted to start Lent on Ash Wednesday, and it wasn’t a stretch to tell the kids we were going to do something special a day early. They ended up eating pancakes for two meals that day! They got little trickets from James and me. The biggest hits were bracelets from The Mermaid Pillow Company. It wouldn’t be a holiday here without something from Star Wars! The three middle boys got little lightsabers, and Eli the Wildman got a Darth Vader hat. As far as cards go, we save some money there and buy them in bulk. I got a 6-pack of identical generic cards, and James and I wrote each child a letter. Valentine’s Day for us, is a chance to celebrate as a family, have a little chocolate, talk about our love for each other and our heavenly father’s love for us.
I put more pressure on myself to make Lent an “event.” Gosh, I realize how stupid that sounds as I write it! What if I don’t teach the kids ENOUGH? What if they don’t grow up to appreciate the meaning of Lent, and it’s MY fault? Shouldn’t I have visual props around the house, intellectual reading material, and schedule of holy happenings for the next 6 weeks, that we can attend and check off of a list? Won’t that make me a better mother? I feel better than I did last year, so I should be DOING more to show everyone else what is inside my heart.
When I really dig deep, and look at these sentiments, I realize I haven’t learned as much as I should have this past year and a half! Did I not learn that a person’s worth isn’t defined by how much they accomplish in a day? As a wife and mother, my worth does not lie in what I make for dinner, what kind of Valentine’s I buy, or what I do/make/create for Lent for our home. It is so easy to get sucked back in to my old way of looking at the world and my life. It’s easy to compare myself with other people, who have never walked a mile, or even a few steps, in my shoes. Shoes that are more often than not, slippers, because I am home most of the time. I’m still not strong enough physically to run a lot of errands, go exploring the outdoors, or even drive a lot of carpools. Why am I so hard on myself? Why, before Lent even started, did I feel like I wasn’t doing it right?
What did we do for Valentine’s Day? There wasn’t a fancy date for my husband and I, there were homemade pancakes. He made them for the whole family, while I laid on the couch, ice packs on my feet. We hugged and loved on the kids, turned off the tv (Olympics and news!) and played charades. We sat around the dinner table in the evening and talked about almsgiving, praying, and fasting. It wasn’t a memorable oration by any stretch. It was interrupted about 72 times by someone asking for water, a napkin, or more syrup. I hope, James and I got the point across, that Lent should be a time to open your heart to God. Open your heart and soul and let God in even more. What does that look like? I think it’s different for everyone. For small children, visual and tactile examples of sacrifice are helpful. We have two jars. Both start out empty. One, we put any money that we find, or they earn, inside. That is our “almsgiving” for the kids. The other, has a small basket full of beans next to it. For every extra good deed or sacrifice we make, we get to put a bean in the jar. I got that idea from another mom, here!
At the end of Lent, the unremarkable brown beans are switched for bright, colorful jelly beans on Easter morning! Our kids get to eat them- which might be the only part they actually remember? The point is supposed to be- your sacrifices, and kind deeds matter. We want to emulate Jesus, and on the day that he rose, they get to see the fruits of their labor turn in to something beautiful and edible!
Valentine’s Day and Lent coincided this year. How fitting. Love. The most perfect example the world has ever known was Jesus, and that he gave his life for us. He gave His life, so that we would know just how loved we are by a heavenly father. This Lent, my goal is to redirect my heart away from what I think I should be focusing on. I want to open my soul, my ears, and listen. That requires me to get out of the way, and let God do His work. It isn’t a 6-week diet, it isn’t a 6-week house purge and cleaning, although there’s nothing wrong with eating healthier and cleaning out clutter. God wants my soul and my heart. Much easier said than done. Clearly, the lessons he taught me were forgotten pretty quickly, when I started comparing myself to others and what I thought I should be doing.
My life is supposed to look like Amy- and no one else. In order to open up my heart more, one of my goals is to put away distractions- to recognize them for what they are, and put them away. I want to live in the moment more, be present. We started the season with attending church, all eight of us, and my parents met us at church. I brought a zero gravity chair, and sat in the back, because that’s the only way I can “sit” through a service. Ashes and Holy Eucharist are an uplifting experience for the whole family. I vowed to listen more, notice. I am going to be reading more books, and I ordered a Lenten study guide from Blessed is She. I love Lent- I look forward to it every year. It’s the chance to start fresh, and punch the reset button! One other thing that helps me be present, is to give up shopping. We buy food, the essentials, but I do my best to stop shopping, completely, until Easter. It’s amazing how many little things I buy, that I think I “need”, but I could do without. What is essential to life? What am I filling my life with, that is because I saw someone else have it, I saw an ad for it, I thought it looked interesting? Yesterday, I thought, oh, I want to buy Aidan something that he doesn’t have, that other children have. It isn’t expensive. I paused and realized what I was doing. The need to consume, buy, fill our lives with clutter. Deep breath! I stopped myself. It’s harder than I think! Every year:)
I am so blessed. That doesn’t mean lucky, it doesn’t mean my life is easy. Even the difficult, painful days are a blessing. Why? I can think of a few reasons. Pain makes me hold still. Reflect. Stop trying to accomplish physical tasks, release my idea of a perfect house/homeschool/wardrobe/menu plan, etc. The difficult days make me clear my mind and just focus on being in the present moment. I pray more! I think of others, and their needs and I pray for them. See? See how a “bad” day can be used as a blessing? I repeat, that does not equal pleasant or necessarily enjoyable! A blessing is something that someone needs, that they might not even realize! But God does.
So, it’s time for me to get out of the way, clear my mind, and my heart, and let God do the work. He’s so much better at it than I am anyway.
The “before” picture. After Lana was born, we had professional pictures taken. I had no intention of being in them, but she wouldn’t stop crying so the photog told me to jump in. I’m SO glad that I did! Hence the ponytail:)
I was contacted recently by a journalist in New York City. She asked if she could interview me for a story on pudendal neuralgia. I knew that would mean opening old wounds, bearing my soul for the general public, and going over humiliation after humiliation for anyone to stumble on. I have been brought so low, so many times, I’m almost immune to it now- almost. I’ve discussed my private parts a hundred times- at least, suffered treatments that were as painful as the injury it self, been shamed for taking medication as directed, and told there was no “cure” for my neuropathy. Through it all, my sweet James stood by my side, and my parents worked so hard to keep our household from falling apart.
The morning of my surgery. Blissfully ignorant. Low risk, thought I would wake up in about an hour, good to go.
I agreed to the interview, knowing that everything that I said wouldn’t make it into print, gory details are the most interesting to read, and that it would definitely be one more humiliation to add to my long list. Truth is, I wanted to share because ever since the beginning, I kept saying to myself “if I ever feel well enough, I want to be a patient advocate. I want to help other people.” Not everyone has a James, and not everyone has parents, a sister, friends, neighbors, and a church family like I do. This experience would have ended very differently had I been alone. There was a woman in a support group that I joined for a while, who killed herself earlier last year. Her story isn’t that unusual unfortunately. Chronic pain is isolating. I know several people whose marriages dissolved because of health struggles. Friendships change and people feel so alone. I am so incredibly fortunate to have the world’s best friends. I don’t see them as often, but they have visited me here at home and while I was in the hospital. I have had meals delivered for a year and a half (not every night of course, but regularly).
I felt like it was my responsibility to share some, so that someone reading the article, wouldn’t feel so alone. Maybe, one medical student would randomly see the article and think, “hmm… maybe I should look into pain management, and chronic pelvic pain.” It’s poorly understood and studied- there are plenty of opportunities to find patients I can assure you! Every person with PN doesn’t have all of the same symptoms. Some of the symptoms described in the article apply to me, and some do not.
I could write for days about the spiritual journey that this has been. I will write about faith regularly. It is part of my daily life, my stream of consciousness, my conversations throughout the day, and my decision making process. At the beginning, everything felt like a bad dream. Surely, this isn’t for real? I will wake up? This horror will pass? I actually thought- I have had my “quota” of suffering for the year. You see, before my surgery, I had a difficult pregnancy. I suffered from hyperemesis gravidarum, and migraines that were so severe, I was treated by a neurologist the entire time, and hospitalized a few times. I was bedridden from the nausea and headache pain- it was blinding. I thought, I have suffered so much lately! That is ENOUGH, and this new fresh h-e-l-l has to pass, soon, right? My thoughts also were along the lines of “I’m a ‘good’ person, not an ax murderer, I have 6 kids to take care of, I’m young, this can’t be real. I have to get better! This sort of thing can’t just ruin my life- I don’t believe it.”
Oh Amy. I knew the folly of my train of thought, but I couldn’t stop the freight train of anger and justifying my conclusions to God. He had to be wrong, it had to be a mistake. If I prayed the “right” way, said the right things, the pain would pass, and I could have my old life back! Wrong, wrong, wrong. Through MUCH prayer- I mean constant, soul searching, scripture searching, and just plain crying…I knew deep down that our Lord isn’t a magic genie in a bottle. You don’t say the right words and He grants you your wish. It doesn’t matter how nice you are, or how many kids you have, no one is immune to suffering. To think for one second that anyone has quota that can be met…is ridiculous, and complete arrogance on my part. Suffering doesn’t only happen to the “bad” guys. There are so many people around the world who know pain, what made me so special that I should be immune?
This was taken before one of the several procedures in Michigan, where I lived for a month. I tried a new type of neuromodulator that ultimately failed. I was forcing a smile, because we were sending the picture to my kids. I didn’t want them to know how scared I was.
God never guaranteed anyone an easy life. HE is enough, that’s sort of the whole point. I can read that over and over, but unless I have lived it- everything else is gone, and all I’m left with is faith, I didn’t internalize it. This suffering, even in the extreme, is temporary. There were so many times that I didn’t pray to live, I prayed that the Lord would let me come home sooner- right then. I couldn’t see around the pain in the moment, couldn’t think five minutes in advance. I begged him to let me go. He, obviously, said “no my child, you are stronger than you think, hang in there.” I know what a dark valley is- one with no light, no directions, just the knowledge that I am supposed to trust. I am supposed to put one foot in front of the other and keep going in the dark. If I do that, trust blindly, I will see more clearly than I ever have before in my life- but not on my time, on His.
I’m not going to link to the article- it’s live, and being well read! I’d rather my kids not read some of those vocab words just yet:)
My grace is sufficient for you (2 Corinthians 12:9)
Ok, it’s ironic that I’m writing on this topic at all, because it’s so new to me! I almost feel a little hypocritical recommending it to others, when it wasn’t even part of my vocabulary for so long. I was in survival mode. Truth is, intense pain makes you selfish. I would explain to my husband- I felt like an animal, retreating into myself, just thinking about surviving. Basic needs- food, water, breathing in and out. I couldn’t even think about anyone else, which is so contrary to my nature, because I was concentrating on making it through life, one hour at a time. When I was able to catch my breath, I realized I had worn pajamas every day for ages. I was housebound, so no reason not to! When I got dressed, my kids would ask “do you have a doctor’s appointment?”
I wrote earlier that I got some make-up for Christmas, because my friend wears it and she looked so cool in her how-to videos! By Christmas evening, I had emailed the company to see if I could sell it, because it was so fun. It was new- feeling pretty and just putting myself together, even if I was staying home:)
The company’s message just happens to fit into my own personal view of self-care. It’s not geared towards glamazons, although, if you’ve seen some of the youtube videos, you are aware that there are some serious Artists, (with a capital “A” out there!!!). Every person is unique, special, and has the right to feel good about themselves. Often, it helps to put a little color on your face. Not always, make-up isn’t required for self-esteem by any means! However, I love some color and to bring out my best features. People have very different ideas of beauty, and what makes them feel good. Sometimes, it’s a hot bath, a chat with a certain friend, new shoes, or just smiling!!!
Maskcara beauty has put together fun collections to celebrate “Galentine’s” Day. If you are single or taken, it’s always a great time to be thankful for the gal pals in your life, who make you smile. Here are some pictures of the collections. Fun, beautiful colors, and way to save money if you want to treat yourself or a friend who needs their day brightened!
I am not trendy, and I do not jump on diet bandwagons for a few reasons. First, I hate dieting! I mean, I count every hour of it thinking…when will this be over? I’ve had six kids so at least six times in my adult life, I was left trying to get back into shape after nine months of crazy hormones and gaining weight in places I didn’t know you could. My feet for example- I wore a size 6 my whole life. I am a solid 7.5 now! Those really cute Tory Burch flats that I saved up for… I gave them away, tear rolling! oh well.
I never tried anything specific and restrictive- just ate healthier and worked out. In the past year and a half, since I abruptly had issues with my health, I have lost a third of my body weight. I was so nauseated, that I dreamed of the day when I was actually hungry again. I ate a few bites a day, to stay alive, but the nausea was overwhelming. It was a result of intense pain, medication, and stress from those two things! I think my face aged a good bit from the stress, lack of sleep, and weight loss. I look very different than I used to- all of my muscle is gone, and I’m left with some prominent bones, and squish! haha. Not a lot of squish, but it took the place of any muscle. I’m 5’5″, and I wear a 0, which for me, isn’t a good look. I know I need to gain some muscle and strength back!
April 2016 after I had my 6th baby, my wonderful Lana
Thanksgiving 2017, in the Rent the Runway dress that I never got to wear to my cousin’s wedding. James snapped this of me after he got back from the wedding. I tried it on, just so I could see how pretty it was. I was stuck in bed that weekend:(
I saw a functional medicine doctor a few months ago. I was/am dealing with really sore (very painful! yuck) joints, bones, and muscle spasms. She looked at everything, ran a lot of blood labs, and came back to me with suggestions that I wasn’t very happy about. True to form, and the stereotype, she blamed a lot of my overall poor health and weakness on “leaky gut.” My husband is a physician, and this past year I read everything known to mankind about chronic pain, pudendal neuralgia, nerve damage, neuroplasticity- you name it, I’ve read it. I had a lot of time on my hands. I stuck to the double-blind, peer reviewed published articles from academic institutions. I admit, I’m a bit of a skeptic. I tried SO many things for pain, when it came to overall health, I was admittedly a little fatalistic. What can I possibly do to change things now?
The “leaky gut” diagnosis seemed a little far fetched, unproven, and probably the same thing every patient is told. I had barely eaten for over a year, and I was given a long list of things to give up! I was not pleased, and I was not easily persuaded to give it a go. Around Thanksgiving, I reached a breaking point where I knew I could not continue on the same path and expect change. I was bedridden, physically miserable, and not improving. I decided, alright, fine, I’ll try what the doc suggested. At first, I lost more weight and felt even weaker. Ok, that didn’t work. After some prayer, contemplation, talk with my husband, a couple of well informed friends, I tweaked some things.
I had heard of the Paleo Diet, or lifestyle. Eat like cavemen, or something like that?? Hoping for a miraculous recovery, I gave it a try. No gluten, dairy, corn, soy, legumes, processed sugar…hmm, what else? No potatoes…there’s a long list! Chances are, you’ve heard of people eating “paleo.” Disappointed, I didn’t see a big improvement in how I felt. So, around Christmas, I decided to throw in the towel and put whatever I wanted to into my stomach. Ok- that’s when I felt it. After a month of eating grass-fed beef, salmon, bone broth and tons of veggies, I got really sick after eating my favorite treats! eh? That was strange. Not to be deterred, I kept trying to eat junk. Comfort food. Darn, I deserved it.
Funny thing was, the comfort food wasn’t comforting. My joints hurt more and I felt nauseated again. After going back and forth, trying Paleo, versus normal diet, I came to the conclusion: for MY body, at THIS point in time, eating a paleo-ish lifestyle does not increase any of my bad symptoms. It is NOT a cure (unfortunately!!) and I still have the same problems, however, I can make them worse by 1) eating junk 2) not enough sleep 3) stress.
When I was younger, healthier, I could eat a variety of foods and it didn’t affect me negatively at all. I begrudgingly admitted to my husband, that I don’t understand this. I don’t understand the WHY right now, I just know from personal experience that I can exacerbate pain, or I can keep it status quo, and give my body the best chance to heal. Do I wish Krispy Kreme doughnuts made my pain go away? Heck yes. Would I gladly gain back the weight, if it meant being symptom free? You betcha! I don’t care about being this size, I just want energy, some muscle, and to take care of myself. That means, eating differently than I used to.
If I am going to live this way, eating a Paleo diet, I have to have some “hacs.” This lady isn’t going to live off of salmon and cauliflower and remain happy. I would be the crankiest person ever! haha. I started messing around in the kitchen the other day, and I created the yummiest recipe! The smell brought the stampede of little and not-so-little feet into the kitchen. Mom, what IS THAT??! It was Paleo Waffles! Oh, ya’ll, they really are good! They taste like comfort food! I made a big batch and froze some. I will share the recipe. I’ll share more in the future! I don’t cook a lot- ok, I didn’t cook for over a year. When I do make something, it’s a red letter day! Please understand, I am no diet expert! I just realize what works for me, right now.
I like shopping from Thrive Market, because I can’t make it to the store a lot. Also, we don’t have a Whole Foods or the like, nearby. Real food, tastes great, from the lady who loves Krispy Kreme! I promise:)
Yummy Paleo Waffles
6 egg yolks
¾ cup of almond or coconut milk
9 melted Tbsp of coconut oil
1 tsp vanilla
2 Tbsp Molasses (I used organic black strap, unsulphured)
1 ¾ cups almond flour
½ tapioca flour
2 tsp baking powder
½ baking soda
½ tsp salt
½ tsp cinnamon
Preheat the waffle iron
Mix all of the wet ingredients
Mix all of the dry ingredients
Combine wet into dry ingredients, stir until smooth, don’t over-beat the batter.
Last Monday, January 15th, we traveled as a family to Nashville, TN so that I could see a pelvic pain specialist. I have never taken a trip to see a doctor, with the kids before. I have traveled many, many times with my husband or one of my parents. I can’t drive myself, so they would drive me and I would recline the seat all the way back and lie flat as we drove hours and hours, in hopes of finding someone who could help me. I don’t pack light! I have a cooler with ice packs, bag of medicine, multiple pillows, and lots of warm clothes, because I am cold all of the time now. It’s stressful- leaving my comfort zone, traveling in pain, wondering if I will have a flare, be able to sleep, etc. I always get nervous ahead of time. I have left the kids so many times- I think I’ve been gone at least 4 months, out of the past 16 months. I miss them so much, and despite the stress of going places with them, James and I decided that this time, it was worth it to go together. That was huge for me. I felt strong enough to bring them along!
James had vacation this week, and the kids had Martin Luther King Jr. Day off from school. As it turns out, they had the whole week off, because of some snowflakes in Georgia, AGAIN! Yes, that marks twice in the same winter that we have gotten snow in GA. Woohoo! If you haven’t seen the Holderness family video about Southern families in the snow, you should! I’m not sure about copyrights and if I’m allowed to post it here? Please, google that one! Every word is true:) We told the kids that they were going to go to Tennessee, and stay at an airbnb place. Well, you would have thought that we were taking them to Paris or something. EVERYONE they saw heard “GUESS WHAT?!! We are going to TENNESSEE!!!!” It was the most exotic, fantastic place they had ever heard of! Haha. What made it so special, is that they had always been left behind when I went on another quest for medical care. To be included! Oh, boy was it a big deal! Team Whitaker was together and it was going to be an adventure, wherever we went!
I went to see Dr. Barry Jarnigan in Franklin, TN. We are acquainted with with him and his work, having spoken to him and seen him in person before. He offers amniotic allograft injections, which are sort of like stem cell injections. The ones he performs are made from donated amniotic fluid from full term pregnancies. A mother, somewhere, donated part of her body that nourished her baby for nine months. Some brilliant scientist figured out how to use this life-giving substance, and create a new substance that could enable nerves to regenerate faster and more completely. I did not feel comfortable receiving stem cells from embryos. That was offered to me, and I declined. It was touted as a “miracle” cure, and for people in pain, they will usually grasp as straws to find anything to alleviate their suffering. For me, having a clear conscience was more important. The amniotic allograft injections were an answered prayer. They take 6-8 weeks to work, and I received my first round last May. I am not cured, but they helped enough that I was able to discontinue several medications.
Our family was SO excited to be together, going on this adventure! I got nervous before we left, but I swallowed my nerves and pushed on. On the way up there, we stopped at a Shoney’s with a full buffet, and believe it or not, it was their first time at a big buffet. Oh my word. We may have broken some kind of record for trips up there. Everyone had to have at least 3 servings of jello. Yes, of all of the 97 differend kinds of food, the green jello was the most enticing. When we arrived, the house had an xbox360- which proved to be more entertaining than all of the Magic Kingdom. Wow. My kids don’t get to play video games so it was a real treat! We had tournaments and the laughter was constant! I have never played xbox before (no desire whatsoever), but my 4 year old wouldn’t play in front of his big brothers. I offered to be on his “team” so we held the controller together. In a shocking upset, we WON! His oldest brother, who happens to be the most competitive person on the planet, was flabbergasted! I was too! Nick, my 4 year old, could not have been prouder of an Olympic medal. He beat his brother! He talked about it for days.
It snowed a good bit, and with the windchill, it was -10 at the beginning of the week! My procedure had a small hiccup at the end, which required that I stay an extra couple of hours in recovery. My husband kept 5 kids in a surgery center waiting room for almost 6 hours! If that doesn’t qualify him for some kind of medal, I don’t know what does. James is my hero. He does so much for me, for everyone, and he does it with enthusiasm and joy (99% of the time!). He is so strong, that I have to remind myself not to lean too hard on him- he’s just human, and the amount of work and stress on his shoulders is enough to make anyone break at some point. He has been our rock in this crazy storm!
I was more sore than I anticipated during the recovery, but I was still so blessed to have the kiddos there. They laughed and had fierce competitions on xbox, ate an unreal amount of snacks and comfort food during the bitter cold winter storm, read books, laid beside me and cuddled, and generally made the pain more bearable, not more stressful. James took all of them to Biscuit Love and the Science Adventure Center on Wednesday, since we got stuck an extra day. No one in Georgia knows how to salt the roads, so there was no way for us to get home:) 8 hours later, after a calorie and science extravaganza, they arrived hom to tell me all about their adventure!
Y’all, I honestly had a good time! We were together again, and it felt so good to be a family. Tennessee meant SO much to them, it was exotic and they got to be included in mommy’s treatment trip. My mom kept my youngest, Lana, who hates cars with a passion. She would scream so hard as a newborn, that she would throw up in the carseat after a 10 minute ride. She just doesn’t do car trips yet! It was a gift, and a blessing, that we were able to be together, that the procedure went smoothly (for the most part), and that I was able to recover while James kept the wild ones occupied! Perspective. God has answered prayers in different ways than I expected and hoped, but he did it in His perfect way. Somehow, along the way when I didn’t notice, I got braver. It wasn’t a big, warm fuzzy whoosh of strength. Subtly, over time, the constant fear diminished. It creeps up from time to time, but I am able to push it back down. I trust that God is working this for good- my outlook is proof! I think going to Nashville to see a doctor, as a family, is a pretty good time!
Here are some pictures from our epic trip- my first one in two years with my children!
We tried to go to a cool, family friendly restaurant, but the wait was too long and the line was outside. So… we ended up in a bar! Eating pancakes:) On the bright side, it was really loud in there, so we blended right in.
Post op, feeling crummy, and guilty about James being in the waiting room for the whole day.
Yesterday, my new niece was born! My little sister, Katie, had her second child. She has a little boy, and yesterday, she had a little girl- they are calling her Stella. I didn’t know if I would be able to see her in the hospital, or when I would get to meet the baby. I did my usual and didn’t promise anything, because I never know how I will feel in advance. I don’t have a lot of good days, but lately I had had a couple of better ones (it’s all relative!). This little girl had been prayed for and hoped for, for a long time! I knew yesterday morning that there was nothing short of a tornado, that could keep me away.
I called and let my sweet, brave sister know that I would be able to come see her! It was raining and sleeting some, and the hospital was about 40 minutes away. That’s farther than I have driven in at least a year. Well, there’s nothing in the world I love more than newborns, so I had some incentive!
Here we are!!!! My hair turned to frizz in the rain, but that is a genuinely elated smile! I savored her soft, fuzzy hair, warm little weight in my arms, and her gentle inhale and exhale. I cannot have any more children, but that just means that I get to love on other people’s babies even more! Katie looked beautiful and so relaxed.
I called James during the day, and pulled the car over. We facetimed and I was in tears. He immediately asked what was wrong. I said, “nothing, I just drove a car!”. Pretty simple, but the pure joy of it brought me to tears. I had to stop and thank God, right there on the side of the road. Again, and again I said prayers of thanks. Not that long ago (ok, even some last week) I didn’t know if I would ever feel well enough to drive myself around. I never took big things for granted, like my loving family, my health, and the roof over my head. It was the little tiny things- like driving a car, or being able to say “yes I will be there”- those simple, small things, I used to take for granted. Now I don’t.
When I got home last night, I told James that when I was standing on the maternity floor, waiting for them to open the door that led to the hallway with patient rooms…I got a familiar feeling. It’s the same feeling I get when I enter some churches and chapels- one of awe. I feel God. It blasts me in the face when I walk onto the hospital hallway- all of those new little souls, fresh and wonderful, each one of them. The world has been waiting to meet them for approximately nine months. Each hospital room has one, maybe two, lives that were meant to be from the beginning of time. They are precious, and yesterday, I got to appreciate that.
I love coffee. Always have, even when I was a kid! I love the smell- I remember walking through the mall when I was growing up and I could smell the one coffee shop from the other side of the building. I have had to change my life, and give up a lot of things in the past couple of years. One clinician told me that coffee was going to make my symptoms worse. Now, I know that her advice was wrong and not helpful (and I should have listened to my husband!). However, at the time the thought that something that I was doing could be causing more harm, made me follow her advice unquestioningly.
I had never heard of interstitial cystitis before. I underwent two cycstoscopies under anesthesia, had biopsies done, and I lacked some of the most common, basic symptoms. All of the tests were negative and it was completely ruled out. However, one person who treated me, latched on to the idea that anything acidic might make me feel worse. Tell a person in pain that they are making it worse… and they just might believe anything! I gave up my favorite beverage for no reason. Interstitial cystitis is very painful, and it has no cure. It affects the bladder of the patient. I learned about the condition and the people who live with it- I met one very brave woman, with the biggest heart ever who cared for me, and my children a great deal. Hats off, and mad respect for the brave people who endure this affliction every day!
I might be the last person to know about this, but a sweet friend was doing a house call for me and cutting my hair one day. I mentioned how much I missed coffee, and she told me about Puroast. Does everyone else know about this? It is real coffee, but without the acid. I couldn’t drive to the store and I was dying to try it, so I ordered it from Amazon. You can also find it in regular grocery stores:) This was a game changer! Sweet James has perfected a cold brew in a French press- so I leave the coffee to him. I eased back in to drinking a half cup a day, with no side effects. It is a bit of normalcy that I have missed SO much!
If you can’t drink regular coffee, but you love it, try this stuff. This post is just a “public service announcement”! I might be the last person to know about this stuff, but just in case- hope this helps one person! I can have a bit of “normal” in my day again, every day.