Enduring Hope in Some of the Lowest Moments; and Caregivers

Intro

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(This episode is lightly edited.) f In some of life's hardest moments, it can seem difficult to find hope. Oh, I'm going to be very vulnerable today, friends. I'm going to share a small piece of some of my hardest times. I'm glad you're here. Welcome to Hope Blvd. I'm Geri Carlson. We are about all things hope, faith, and determination. I'm a firm believer that there is always hope. Always.

Speaker 0:38

I'm going to dig a little deeper today and share a small piece of my personal story, especially from those earlier months. And I hope it serves as sort of a reminder or a way to let you see the hope in difficult situations. My family and I were told I should be placed on hospice and that there was no hope. In fact, on more than one occasion, my family was told they should prepare to say goodbye to me. But God. Doctors

Medication, Abdominal Pain, and Paralysis

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prescribed multiple pain meds, including oxycodone, morphine, fentanyl, and others. I had medication cocktails that were the likes of what end-stage cancer patients receive in the hospital. So when they learned I have variegated porphyria, a very rare genetic blood disorder, they were finally able to treat it, thankfully, which helped relieve much of the pain. However, the paralysis continued for nearly a year. I had lost a lot of weight, and I also lost about 85% of my hair, which was traumatic enough. But going back to the not knowing, it's one thing to try to explain how awful this was, but I wish I could tell you what to do if you're ever in such a state. The only thing I could do was to endure while a hospital-wide research team of doctors worked to figure out this mystery. In the meantime, the pain meds barely took the edge off. I was given numerous hemin infusions -- that's the part of the blood that carries oxygen through the body. But that didn't stop the acute attack as they had hoped. I repeatedly called out to Almighty God, begging, please God, please God, over and over again.

Hope and a Purpose

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One might believe my pleas fell on deaf ears, but I knew better. I had studied the character of God, the compassion of Jesus Christ when he walked this earth. He was there with me. I just knew it was not yet time to reveal the purpose of my suffering, and I didn't like it. And that didn't keep me from begging for mercy. Today I know that purpose is to share the message of hope from the God of hope. And here we are. Mercy came in the form of Givlari, a new medication at the time. We didn't know it existed, but God,

Porphyria

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again. Immediately after I was diagnosed with porphyria, Amy posted an update on Facebook asking if anyone had ever heard of porphyria. Most doctors don't even know what it is, and my family was trying to learn more about it. Well, God works in beautiful ways. A sweet friend saw Amy's post and contacted her husband, who happens to work for the only pharmaceutical company that makes Givlaari. And he immediately called Rob. Here's the best part of this. What are the chances that Rob's golf partner and dear friend would know about porphyria, much less work for the company that makes the medication I desperately needed? God's hand was in this all along. The doctor told us it could take a month or two before we could get the injection. Oh my word. But I needed that medicine now. This was on a Thursday. By Monday, I had my first injection, thanks to our dear friend advocating for us. The intense pain began to fade, and to say I was grateful is an understatement. My kids, now these amazing adults with beautiful young families of their own, showed up for me. When the most severe attack began to calm down, they brought my grandchildren to see me in the hospital many times. It was medicine for my soul. They were all there to show their love and support, and it meant the world to me. Amy repeatedly answered my questions. Um, did I mention I'm inquisitive? Yeah. Amy is a researcher, so I was in good hands. My family also fielded questions from concerned friends and family. Questions like, where did this come from? And how did she become paralyzed? We all had more questions than answers.

Family and Support

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The nights were hard. While I was in the hospital, I wasn't able to use a call light, even the kind that allowed my chin to press down on the oversized button. So I was assigned a nurse's aide in my room around the clock, even when my family was there. Whenever my son came to visit, I vividly recall him telling the aide, I will feed my mother. There was something about how he said it, something reassuring. I love that memory, but I hated that my kids were in that position to see their mother like this, to feed me, to be my support. Moms like to be the support person. As I've mentioned, my husband Rob was by my side every day. I am blessed beyond measure. These are my people, and I wouldn't have wanted to try to survive those horrible two years without them. They made a tremendous difference. I cannot tell you what my family being there meant to me. They love so well. I couldn't have received that kind of support from anywhere else. I'm stronger for it. But most of all, I know I got through it all with the help of the Lord.

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It was just too much. I often had to endure the suffering with God's indwelling strength. And it did get me through. I say that to repeat the promise that there is always hope. I admit, at the time, I didn't know if I could take another minute, but clearly God knew. And he made sure I was strong enough for it.

Nurse's Aide Abuse

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The nights were the hardest. I held back tears when Rob said goodnight to me and headed back to Amy's house where he was staying. It was closer to the hospital. She lives in Ohio. Even when Rob or the kids left, I didn't want to cry because I didn't want them to feel bad. And I wasn't able to wipe tears from my face. It's the smallest of things you realize you can't do when you become paralyzed. Besides, I have always been a private crier. When I was left alone with a nurse's aide, it wasn't always pleasant. There were a few nights that still haunt me. The cruel behavior of some nurses' aides. One aide ignored me for hours because I didn't pronounce her very unique name correctly. I was shivering and asking for blankets, but she just stared at me. I asked again. Again, nothing. I asked for a drink of water, but she looked right through me. Any other time I might have gotten up and walked over to her and given her a piece of my mind. But obviously, there was the whole being paralyzed thing. There's a whole new level of vulnerability when you're paralyzed. I quickly became aware that this nurse's aide was unstable and I didn't know what she might do. I apologized profusely for mispronouncing her name. Earlier I had asked her to write her name on the whiteboard, which was protocol, but she didn't. I tried to remember it repeating it over and over again silently. She shared with me that her mother made up the name, thus the whole uniqueness of it. I couldn't trust her. And as someone who is known to not shy away from speaking up for what is right, even if it's for myself, I couldn't risk saying a word to anyone if they entered the room because I would still be left alone with this unstable woman. It was a long, shivering, frightening night. I laid awake all night counting the moments for her to leave and when I could finally get a blanket. I reported this to Rob and Amy the next day. They wanted to file a report, but I asked them not to. Yet I wanted to make sure that aide would never return. Rob and Amy both spoke to the head nurse to make sure that aide would not be assigned to me again. Amy then left, and Rob stayed extra late that evening. I was terrified to think of who might be assigned to me next. Lying there helpless is hard enough without having to deal with mean humans. This woman scared me. There was just something about her.

The Best Response

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When Rob was preparing to leave for the night, I cried and begged him not to leave me. I had never done that before. He was exhausted and I felt bad putting this on him, but I felt terrified, desperate. I hadn't slept the night before, and I was fearful of who might be assigned to sit with me again for the night shift. Rob attempted to assure me everything would be alright, but I was very anxious and unconsolable. At one point I told Rob to come closer and put his face next to mine so that I could look him in the eye and quietly, privately tell him that I was desperate and that I just couldn't take anymore. I had had enough, and I had suffered so much by this point. I will never forget the look on Rob's face. He didn't say a word. What he did meant so much more. He wrapped his arms around my limp body and pulled me close to him and held me as I sobbed. There has never been a more tender moment between us.

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Shortly after this, I saw a nurse's aide walk in the door and announced that she would be sitting with me through the night. Are you kidding? She was my favorite. I mean, thank you, God. I was elated, and after Rob wiped my tears, I was able to let him leave. I also had bad experiences with a few others, and it was always on the night shift. But God saw me through those difficult nights as well. And he'll see you through hard times also, friends.

Wonderful Caregivers

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I was later diagnosed with severe PTSD, especially from that first year. Each member of our family have separate experiences, but we all suffered. Rob was forced into an early retirement to be at my side while I was hospitalized for eight months, and then to be my full-time caregiver when I was able to go home. He suffers with a bad back, having had back surgery several years ago. And being a caregiver is hard, backbreaking work. But to this day, he never complains. There was no medical staff or care team when we came home. It was Rob and me, which meant Rob was on his own. I remained paralyzed from the neck down for several more months after I got home, a total of 11 months or so. But it took another year before I could begin to do some things on my own.

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Still needing help, we were able to hire a nurse's aide that remained with me for almost two years. Her name is Rhonda, and she is amazing. She came to the house several mornings a week to help me shower, get my braces and shoes on, and get me ready for the day. She was with me until just a few months ago, actually, which helped Rob get a break, at least in the morning. Rhonda was a blessing, a true gift from God. Just before Rhonda, my friend Debbie, a nurse, came over once or twice a day to help take care of me for the initial two months, and then less frequently for another month while she kept a close eye on some wounds I had developed on my feet. Rob and I were both grateful for her. I don't know what we would have done without Debbie, especially in those early months. She was a godsend.

Recovery Ongoing

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I hated that so many people had to work so hard to take care of me while I laid there helpless. It definitely motivated me to work hard to do for myself, but that was a slow transition. The truth is, I'm still pretty much in transition. I had to relearn everything, sitting up, feeding myself, brushing my teeth, walking. I mean, the list is endless. My balance is still poor. I still can't put on my braces or tie my shoes, and I can barely sign my name. My hands don't work very well. Rob hired several other specialists, like physical therapists, an occupational therapist, and additional nurses' aides who came and went. There was so much out-of-pocket expense that drained us as healthcare costs are ridiculously high, not to mention all the supplies and medical equipment we had to purchase. A dear friend donated a hospital bed for us before I got home, which was so kind and so helpful. We would have expected insurance to cover some of these costs, but it didn't. Especially in the earlier months once we were home in that first year. We banked on prayer, and God has seen us through the hardest times. Today I'm managing on my own mostly, but everything I do takes at least three to five times longer than it should. Still, there are plenty of things I continue to need help with. And Rob is right there.

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Entering the second year of this ordeal, I asked my geneticist and other specialists to connect me with other patients who were diagnosed with porphyria and who were paralyzed and had endured a similar journey. No one was getting back to me at first. Then finally, one of the experts chose her words carefully. I was told there wasn't anyone right now because most patients don't survive such a severe attack. One specialist said that I was the worst parpharia patient she had ever seen over the course of her some 20 years or so. I was in ICU a few times and had my own near-death experience, another story for another time. But they finally did connect me with a couple of people who had become paralyzed for a number of months and endured lengthy hospital stays and had really suffered. I met some sweet people and we exchanged our trauma stories. Since then, I've gotten to meet even more porphyria survivors, and connecting with them is a blessing.

United Porphyria Association

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In September 2024, I became an ambassador for the UPA. That's the United Porphyria Association. I'll put a link in the show notes. I'm also on UPA's president's counsel. I basically volunteer as an advocate. I facilitate a monthly group for patients who have experienced paralysis from AHP, that's acute hepatic porphyria. This was something I was passionate about, to start a group that could support patients like me with a history of paralysis. I shared with my geneticist, who I love by the way, and with the UPA's president, Kristen Wheeden, a lovely, caring woman, that this was a need not yet being tapped into. There was nothing like it available, and they agreed. Another wonderful UPA advocate and porphyria friend, Myra Martinez, encouraged me to start the group. On March 19th, I hosted the first Connect Up group through the UPA for AHP and paralysis. I know I could have used a group like this when I was suddenly paralyzed and needed support. And there are so many others. I'm grateful for the organization for hearing me. The UPA is a wonderful organization with great, compassionate people.

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So, God knew when I laid scared in that hospital bed over two and a half years ago that I would get through those long nights and months of suffering and go on to advocate for others. It's hard to imagine things will be okay when we're in the midst of so much pain and suffering. The thing that carries me most is reflecting on God's promises. And we're not going to know those promises unless we read God's word or listen to his word being spoken. I encourage you, friends, to stay steadfast and surround yourself with believers and with people who will respect your choice to be a Christ follower.

Psalm 23

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My faith take today comes from Psalm 23. Maybe that's no surprise. Psalm 23 is that, you know, the Lord is my shepherd, comforting, but this one really resonates with me. Psalm twenty three verses one through four read The Lord is my Shepherd, I shall not want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul, he guides me in the paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me. Your rod and your staff, they comfort me. Hmm. The Lord is our Shepherd, and He takes care of those who follow him. He will bring peace and comfort and forgiveness. Some have asked where the name Hope Blvd came from. It actually was inspired by the twenty -third Psalm, especially the third verse. In 2007, I was sitting in our church sanctuary. I had been asking God to help me name the counseling ministry I was working on. During the offeratory, I looked down at my open Bible to see Psalm 23. As I began to read it, the third verse jumped out at me, often a sign that the Holy Spirit is highlighting the message just for us. Again, the third verse reads, He restores my soul and guides me in the paths of righteousness for His namesake. I distinctly remember saying, For your namesake, Lord, gladly I will give you all the praise all the days of my life. It was just a couple of years before that I knew God had been calling me to share the message that there is always hope. I had just written a book called I Stand Amazed about another health scare at the time, which in hindsight surely has to do with porphyria. Only I didn't know I was carrying that genetic and rare disorder at the time.

There Is Always Hope

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I've been committed to sharing hope all these years. Anyway, putting the word hope together with boulevard instead of paths (from paths of righteousness) seemed right. And Hope Blvd was born. It's been used as a longtime ministry name for me, and since the message of hope hasn't changed, it just seemed fitting to use Hope Blvd as the podcast name. Thank you for listening. If this is helpful or encouraging, please leave a thumbs up and share it with someone who could use some hope and encouragement. Until our paths meet again, make it a great day for you and someone else. And remember, friends, there is always hope. Always.