Enjoying seeing and loving on my children and grandchildren (no matter their age)
Enjoying a sunrise or sunset; or a day with a blue sky and white billowy clouds
Enjoying the smell of clean air
Enjoying rain that nourishes the earth
Enjoying a funny story
Enjoying great music… no matter what genre
Enjoying talking with my friends
Enjoying the beauty of a night time sky with thousands of twinkling stars
Enjoying the beauty of flowers
Enjoying seeing a butterfly go from one flower to another or a hummingbird do the same
Enjoying my dog who loves me unconditionally
Enjoying a rainbow
Enjoying a funny movie
Enjoying a ride in the park
Enjoying a walk if I can
Enjoying a spring day when the weather changes from winter to warmer weather
These are just a few things I can enjoy. I refuse to let Pulmonary Fibrosis define who I am or what I can enjoy. I will find, and you can too, one thing each day to enjoy and be thankful for. This means that I will have 7 things each week, 28 things each month, and 336 things each year to enjoy and be thankful for. We can all have more if we want. 😊
A friend battling multiple health issues shared she is experiencing excruciating pain. “It says in the Bible we are to be thankful at all times and in all circumstances; I’m having a hard time doing that when I’m in so much pain.”
The Apostle Paul is the ultimate role model for being thankful in all circumstances. He was shipwrecked, imprisoned, tortured, starved. His unfailing love, trust, and knowledge that God would never leave him or forsake him kept Paul going? But was he crazy? Did he not feel pain? He was alone…. or was he? Scripture tells us at least 100 times, that God will never leave us or forsake us. How do we humans keep our faith without a real; flesh and blood; person telling us we’re loved; we’ll be okay? Circumstance causes us to question: Did God give me this disease; why did I lose my spouse; job; did I do something wrong? The answers are: He didn’t give you a disease, no matter what he loves you, he died for you. We live in a fallen world where death, disease and evil happen. Humans have a free will so sin happens. Times of suffering and pain are times we grow the most; learning not to go it alone. Reliance on God in every aspect of our lives is paramount. Our goal is to have a personal relationship with him. Notice I didn’t say a religion with him, I said a relationship with him. It’s taken me years to get to the point of my faith not being in a religion, but in a relationship. God says, “take me by my right hand and I’ll walk with you.”
Romans 12:12 NIV “Be joyful in hope, patient in affliction, faithful in prayer.” Joyful in hope, for me, is where I’m going to spend eternity. Patient in affliction: If I focus on what I’m supposed to learn through my trials; I will be given wisdom, and knowledge, to use to help others by drawing from my own experiences. (Sometimes, I say, “Lord, what is it I’m supposed to learn from this so I don’t have to keep repeating?”) Faithful in prayer: Thanking him for what he’s given me. I’m happiest when doing things to help others. Matthew 25:40 NIV “The King will replay,” ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters, you did for me.’
Things to be thankful for: The sun, rain to nourish the trees, flowers, crops that sustain us. Children, grandchildren, relatives, friends, even if they don’t meet your needs or support you. Being patient with them and giving them grace is your gift to them and to you. Be thankful for those God has sent in your life; those angels who come when you haven’t even asked, who help you through a tough time or crises, then leave never to be seen again.
How can I be joyful doing for others, when I can barely take care of myself you ask? It doesn’t have to be anything grandiose. Sending a card; phone call; meal for someone who has been sick; lost a loved one; struggling emotionally. If you can’t cook a meal, and are able, call the person and ask what their favorite restaurant is and have a meal delivered. If you can’t do anything but just survive the day yourself, you can give the best gift anyone could give — the gift of prayer. Everyone needs it, especially non-believers!
James 1:2-3 NIV 2 “Consider it pure joy, my brothers, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance.” In other words, “the things you go through, make you who you are.” The hardest scripture that I struggle with: 1 Thessalonians 5:18 NIV “Give thanks in all circumstances for this is God’s will for you in Christ Jesus.” To be perfectly honest, this really gets to me. Does God really want me to have Idiopathic Pulmonary Fibrosis where my lungs have scarred; there’s no cure; when the disease progresses to its final stages; I’ll be on oxygen 24/7; my lungs won’t oxygenate my vital organs; they’ll finally shut down; my last days/hours spent gasping for breath while given medications so I don’t panic because I can’t breathe? Is this what I’m supposed to give thanks for? This is the will of God for me?? Answering this, the Holy Spirit conveyed to me, you just stated, “the things we go through make us who we are.” God is using you to reach people with your Hope for the Breath-less Charity whose purpose is to raise research money for IPF; help patients with bills; educate about IPF. God has given you a purpose and a passion through knowledge and wisdom you’ve acquired to help patients. Writing allows you to achieve this.
The biggest thank you is to thank him for sending his son to die on the cross for your sins. Picture a box wrapped with a beautiful bow, and someone says, “here’s a gift for you, all you have to do is accept it.” Inside, is the gift of life where you will see God daily forever. Simply say: “Lord I’m a sinner, I have sinned against you and my neighbor, (name your sins) I ask forgiveness for these sins and the sins I may have forgotten. Come in to my heart and be my Lord and Savior from this moment on, help me daily to live a life like yours.” After you have said this prayer, you can say: “I know where I’m going.”
I hope this story has helped you. Writing it helped me. It was written by me with the Holy Spirit’s help. I give God all the glory!
~Ruth O’Bryan~ 2020
Inspired by a piece the great evangelist Billy Graham wrote on the subject.
You went to your primary care doctor who referred you to a pulmonary doctor, as he or she could hear crackling in your lungs. The next step taken most likely was for the doctor to do bloodwork and a High Definition CT scan, and the results are in…. and you have been diagnosed with Idiopathic Pulmonary or Pulmonary Fibrosis. Now what? The first thing I will tell you is: “Don’t focus, obsess, spend your entire day and most of the night on those year numbers you have been either given or seen on-line and you’re scared to death. Stop, Stop, Stop! Take a breath and let’s focus on what you can learn and do. Stay as positive as you can.
Most likely your doctor didn’t give you the news gently or with finesse, or you may just be finding out that you have had the disease for several years but was never told! Why! We can only surmise that the doctor didn’t want to tell you because there is no cure. Or, the doctor told you and this is how it went: The tests we did show you have Idiopathic or Pulmonary Fibrosis; there’s no cure; you’ll end up having to go on oxygen; your prognosis is that generally, you have 3-5 years to live. Wow! I bet you feel like you got hit in the gut, knocked off your feet, and can’t seem to get those feet under you to find your way out of the office as quickly as possible. If your doctor is a good one, he or she will tell you about some medications that are out there that don’t cure the disease; but, have been shown to slow the progression. Again, if they are good, they will tell you to get into pulmonary rehab which will help you to gain strength in both your body and expand your lungs to keep them supple and viable for as long as possible. They will tell you to eat a healthy diet consisting of foods that keep your body in an alkaline state to avoid further inflammation in your lungs, or any other part of your body. I was on vacation with friends when I got a voicemail message from my doctor who said, “Mrs. O’Bryan, we have gotten the results of your CT scan, and we need to talk; it’s not an emergency, but I’ll call you later.” I waited a day and a half, and finally called the office and said, “I need to talk to the doctor, he’s ruining my vacation!” A bit later, I got a call back; here’s how that went: “If it looks like a duck, walks like a duck and quacks like a duck, it’s a duck. You have Pulmonary Fibrosis.” Yep the rest of my vacation was a load of fun.
After your diagnosis, on the way home, you’re trying to process what you just heard. If you have a loved one or a friend who went with you, you are both trying to process the news. When you got home, you probably sat and tried to digest the entire thing, then immediately checked with “Dr. Google” to see what the heck it is you have, and try to find out more about it. Now, Dr. Google has his place in getting you information you need; however, remember this: He isn’t a real doctor!!! If he consults with other doctors, and it’s documented, that’s one thing; but the first thing you see when you go in to his office through the portal of your computer is: Prognosis after diagnosis is 3-5 years to live there are those numbers again.
Let’s stop right now and talk about the numbers you see. First thing I want you to do is strip down naked and check out your body from the top of your head to the tip of your toes; check with a mirror and check your backside. If that’s too scary right now, or you don’t have the strength, wait until you next bath or shower and do it; however, the sooner the better! 😊 Do you see anywhere on your body and expiration date? I can guarantee you that you don’t! If you’re a Christian, you know that there is only one person who knows when you are going to die and that’s God. God with a capitol “G.” There are those who think they are God with a big “G” but they are actually not gods at all. Their thinking is that MD after their name means “Minor Deity,” and they know when you are going to die given previous statistical information; what may have happened in the past to previous patients, but they don’t! I was told right out of the gate, “the bad thing about this disease is that it can move very quickly.” And in some, it can, and does; but it doesn’t necessarily mean for you that it will. When I was diagnosed in 2016 after a lung biopsy which showed definitely the diagnosis, my doctor had already heard the crackling in my lungs in October of 2012. From March of 2016, I obsessed with those numbers; and according to them, I was going to be dead by the end of the year! It’s 2020 and I’m still here. 😊 Let me mention now, that there are good doctors along with the not so good ones. There are those that have the patient’s best interest at heart, and want to make their life the best they can have.
Remember this as well, being diagnosed with an incurable disease takes time to process. It’s a grieving process. You have to go through the stages of grief: Denial, anger, bargaining, depression, and acceptance. The process is normal, so don’t think you are the only one going through this. In addition, going through the stages you will need to work through them at your own pace. We are all going to die at some point none of us know when. The last two, depression and acceptance, are the hardest for me because of having to deal with the disease on a daily basis; there’s no getting away from it. You will need to find your way through the process much like you did when you lost a loved one. You have lost the life you knew; but you will need to refocus on a new way of life as you deal with your disease. It’s a journey you will take, we all take, you just have to find your way through with whatever tools you find along the way. For me, I’m a Christian and I rely on my faith; and friends who share my faith. At the end of this blog, you will find some resources that will help you through the process.
I believe, as do others, the information on the web is not consistent with what is going on at this point in time. The two medications that are currently available have slowed the progression for some. There are multiple other medications that are in the pipeline right now, meaning they are in the end stages of phase three clinical trials, and will either be, or will be within a short period of time, made available to patients. There is a plethora of research being done now all over the world. If you are a silver lining person, the one thing that Covid-19 has done for we who have IPF, is that the consequence of the virus is scaring and difficulty breathing long after the patient is over the virus. Do you know what that means? Lots and lots of money is going to be going in to research regarding the scarring of lungs. I’m not a Pollyanna thinking that the cure for lung scarring is right around the corner and will be there for us, no I can’t do that; however, because the disease runs sometimes in families, it will hopefully be out there for our children and grandchildren and others who develop the disease.
The purpose of this blog is to tell you things you can do to live your best life!
Don’t obsess over the numbers, they don’t apply to everyone.
Find a good pulmonary doctor; one that specializes in IPF/PF.
Find some support web sites. There are several out there that are most helpful. These sites are usually for patients and caregivers. Caregivers, are often-times the ones who seek out the information because the patient just can’t do it on their own; or, they are in denial. Denial is an okay address for a while, but can’t live there forever. These sites have patients who are living with the disease who can give insight into their experiences, things they have learned over their years with the disease, as well as recommendations on various issues that work for them. The dreaded IPF cough, kinking oxygen hoses, etc. But most of all, I want you to remember this: They will give you VALIDATION! What do I mean by that you ask? What I mean is the patients on these sites have walked the walk. No one, I mean no one, not even your spouse, your family or your friends can possibly know what it’s like to have IPF/PF. Are there other diseases that are awful, yes indeed! But not being able to breath is the most fundamental action your body does on a daily, hour to hour, minute to minute basis to keep you alive.
Yes, you’ve been dealt a lousy hand, but you must not let the disease define you. I’m not saying it’s easy, it’s not! It’s a daily process sometimes as I said, minute by minute. And the Covid-19 we are experiencing at this point in time makes it worse. I admit I have cloistered myself because I have four grandsons all under the age of seven and I want to be around to see them grow and to let them know their Nana. If I didn’t have them to live for, I would go out and about and not worry, because as a Christian, “I know where I’m going.” I tell myself this all the time. No matter what happens, I’ll be okay. That doesn’t mean I don’t get anxious and depressed, but I dig my way out. I have to. You have to.
I would highly recommend you seek out help from a therapist or counselor; although they don’t know what you’re going through; they can listen, and teach you coping skills. If you can’t afford a counselor, please, please, please seek out asap a support web. Sometimes, you just need someone or somewhere to vent to people who know what you are going through. Your family won’t understand. And you probably don’t want your family and friends to know what you are going through because they are scared too and they won’t understand, and they’ll let you down. Some patients I heard of indicated their families have walked away from them, or they are in denial and won’t leave the denial address because it’s easier for them to stay at that address! Learn to meditate, do breathing techniques, read a devotional, read your Bible if you are a Christian. Listen to positive inspirational people. Listen to music.
Get together on zoom, or facetime, or a phone call, and talk to your family. I’m writing a book called “The Story of Me.” If I am not able to see my grandsons for a while, or if I leave this world and go to my permanent home, they will know me through my story.
Try to give yourself a purpose for your life. Everyone has to have a purpose in order to live a fulfilling life. Find a way to give to others in a way that makes you feel like you are doing something. The things we go through make us who we are. Going through IPF/PF makes us unique; that uniqueness can help others. One man honored his wife, with his family’s help, by holding a blood drive in his wife’s name.
Disclaimer: *Note, these suggestions are from what patients have used to relieve their cough. You will need to check with your doctor if you choose one or more of these suggestions to make sure whatever you choose doesn’t interfere with something else you are doing.
One of the things that a person who has been diagnosed with IPF/PF has to endure is the cough. The sometimes never-ending cough. It can be dry, it can be productive and it can be relentless.
Here are some of the things that patients have done to alleviate their coughs.
Pineapple juice 100% – the person who suggested this said “the fresher the better.” One person keeps a small can in her purse. She gets them on Amazon 100% Dole.
Jakemans Boston England (The Original and Famous Throat and Chest) person gets at GP Tessalon Pearls (Benzonatate – prescription required from your doctor) Taken three times a day.
Robitussin DM Fisherman’s Friend Extra Strength cough suppressant lozenges (these are strong and you may need to check out several flavors to find one you like)
Wintergreen Life Savers
Nothing scented (candles, dryer sheets, use green unscented cleaning products. You can use hydrogen peroxide to kill mold in the bathroom or anywhere else. Simply spray it on your grout and it will kill the mold. You can spray it on the grout on your floor also and wait a half hour or so and then use a tooth brush to brush the grout and then wipe it up or wash the whole floor. The great thing about using it is, it doesn’t smell.
Eat small meals
Honey and lemon juice
Morphine under the tongue. (This will have to be provided by your doctor and monitored…. This is used typically in the end stages. Or when you go under hospice.
Don’t eat right before you go to bed. Watch what you eat. If you have gerd, be careful eating or drinking things that produce it.
Chocolate, spicy food, etc. Many folks have been told to do away with dairy as it exacerbates the phlegm which produces coughing.
One person shared that she uses a breathing technique. As you breathe in hold to the count of four, breathe out with pursed lips slowly like you are blowing out a candle to the count of eight.
Virtussin A/C cough expectorant – this is a cough medicine that will require a prescription. Since it has codeine in it, you will need to pick up the prescription from your doctor’s office, they will not send it to your pharmacy because it is a controlled substance.
Talk for IPF Summit 2017, University of Louisville
Image above: Ruth giving her testimony at the 2017 UofL IPF Summit
Good Day Everyone.
My name is Ruth O’Bryan and I have the distinction of having been a caregiver for 15 years for a chronically ill patient and now I’m the patient; and today, I’m going to be talking about what I learned as a caregiver as well as the patient perspective of dealing with a chronic life threatening illness. How many here are patients, how many are caregivers? I fought for 15 years alongside my husband as he battled prostate cancer and in March of 2016, I was diagnosed with IPF. So, I have walked on both sides of the street so to speak. I also facilitate the caregivers support group for the UofL Air Benders group.
My husband was diagnosed with prostate cancer at age 55 and went through surgery as well as multiple chemo, and radiation treatments. He also developed hydrocephalus which required a brain shunt be put in as well as three revisions within a three-week period when the shunt stopped working. In addition to that, he had a knee replacement. While reviewing his records one day, the doctor asked him a question about when a procedure was done and my husband turned to me and said “when did we have that done?” The doctor chuckled, and I asked him what he was laughing at and, “He said your husband said we.” I said, “You better believe it, I have been with him through it all!” I went to all of his doctor’s appointments, most of the chemo treatments and slept on various uncomfortable reclining chairs and one leather couch for a week that wasn’t too bad during his hospital stays. I also usually didn’t get home until the wee hours of the morning when he was admitted. I just loved it when they would tell me in the emergency room (at 10:30 or 11 by the way) that they had to wait to get him in to the room because someone was moving out and they had to clean the room. We all know it was a shift change. I’m not complaining, my wedding vows included for better or for worse and in sickness and in health.
After the diagnosis, my husband agonized over what course of treatment he should pursue. Surgery, radiation, seed implants? We wondered around praying for God to let him know what to do. I gave him reams of paper with different options. But he never really looked them over. He didn’t want to face it. He somehow decided to have radiation treatments and had gone in to have the tattoos done. He came home all in a tither as he said “you know the technicians had to lift my gown and tattoo me. They don’t look like they are even out of high school. It was embarrassing.” I told him, “those girls are well out of high school and they have seen it all believe me. If you want to know what embarrassing is, go have a baby.” Right ladies!!!
So he then had to go back to the urologist for his hormone shot and the urologist said, “You’re not a candidate for radiation treatment, your Gleeson score is too high. You need to have the surgery!” A person I worked with said, Ruth, you were asking for a sign, that’s it! Now caregivers, what I learned from this experience was. 1. You can’t fix your loved one. 2. You can’t make the decision of the treatment they will pursue. I wanted my husband to have the surgery right from the get go, but I didn’t say anything. Do you know why? (A) It wasn’t my life or my body. (B) I didn’t want to tell him to have the surgery because one of the side effects could be incontinence, and I didn’t want to spend the rest of our lives with him thinking (he probably wouldn’t have said it) but would have thought it — “if she hadn’t talked me in to the surgery, I wouldn’t have this problem.” Anyone who has been married any length of time knows exactly what I’m talking about. It would be like the Adam and Eve thing. “If you hadn’t made me eat that apple!” 3. You can’t take ownership in your loved ones illness. You can’t feel guilty because they are sick and you are not.
Now we have gone over what you can’t do, let’s focus in on what you can do! You can support them, love on them, listen to them, go to appointments with them, you can take notes, help them research things, and you can be their coach. You can try to encourage them to eat properly by supporting any nutritional changes in their eating habits. In our support group meeting this month, we talked about helping the patient when they are in a breathing panic. Being their coach like one does when coaching a woman who is having a baby with breathing. You can do the same thing for an IPF patient. Now my husband developed diabetes and I tried my best to keep him from overdoing with the sweets and trying to eat a diet that would help his body stay alkaline, because cancer, as you know feeds on sugar, but it was a battle. I have been told that he lived at least seven years longer than he would have if it hadn’t been for the pit bull with lipstick trying to make sure he ate right and made all his appointments, and that the treatments he was given were on course according to the protocols being used for prostate cancer at the time. But I have to tell you, it does take its toll, so patients try to help your caregiver out and try to be compliant when it comes to your health. Listen to the things that you are told to do by your physicians. And I will also tell you that neither the patient nor the caregiver should feel ashamed when seeking professional help in dealing with the situation. It’s not easy for either person. I asked a man whose wife had died of breast cancer and he had remarried a woman whose husband had died of prostate cancer and this man had been diagnosed with prostate cancer… I said you’ve been on both sides, which is easier being the caregiver or the patient, and without hesitation he said “oh the patient.” I’m not saying this to make you patients feel guilty. It’s hard for a caregiver to see their loved one suffer.
Now patients, I’m going to address something with you all that is very important. Does anyone know what the greatest gifts you can give your loved ones? One of them, usually no one wants to talk about, is final arrangements. My husband was the ultimate fighter and continued on until our twin grandsons were born, and then a week and a half after that, his body said “I’m done.” He fought to see those boys and then the complications from a final procedure were finally too much. He died in November 2013 two months shy of our 46th wedding anniversary and we had dated two years before we got married so we were together for a long time. I never brought up final arrangements all those years 15 years because I didn’t want him to think that I thought he was going to die soon. Finally the May before he died, (with I feel, the prompting of the Holy Spirit) I told him “we need to take care of our final arrangements.” I told him, “I could die before you do,” and I almost did. That July, my stomach went up through my hiatal hernia and twisted and I had to be rushed to the hospital and had emergency surgery performed at 11 p.m. on the 4th of July. The doctor nicked my spleen and couldn’t stop the bleeding and had to perform a splenectomy. So I am spleenless. My niece that has no filter said, Ruth when that happens to dogs or horses, they die. Because that May, we had done our final arrangements except for the obituary, the process in November was much easier on me than it would have been if we hadn’t. A few months ago, in my Sunday School class, we were in Genesis in the part where Abraham was grieving over the loss of Sarah and we talked about the funeral process in those days and the teacher asked if anyone had had a bad experience with funeral homes. One person raised their hand and said “yes we had gone to check on arrangements and when we finally needed them, the price had gone up. In case you don’t know, you can lock in the cost if you either pay up front or make payments. He asked if anyone else had had a problem and a woman raised her hand and said “yes, when my mother died, they tried to sell us a flood insurance policy on her plot.” (You can’t make this stuff up folks) My arrangements are taken care of.
The other things to take care of are the legal documents like a will, a power of attorney, medical power of attorney, a living will so your wishes will be carried out and your family members don’t have to make those end life decisions. Now there is a Christian Legal Aid Society that can help you with everything I believe but the will. I asked an attorney about Legal Zoom and he indicated that wasn’t a good idea. So you will need to have an attorney do that. You can find one on line, type it out and have your wishes put in there and then take it to an attorney to be checked at a nominal fee.
The other thing I would encourage you do is help your family by clearing out the junk in your home. Get rid of anything you can so your family members don’t have to do it. It would most likely fall on the caregiver. I retired a year ago this past April and I spent all last summer and half the fall with the help of a friend getting rid of stuff. We worked a few days a week for a few hours, and I am down to the basement and the garage. I don’t want my kids to have to do it. My youngest daughter has thanked me at least 5 times already because it would fall on her.
Folks, this stuff shouldn’t be looked at as gloom and doom, it should be looked at as the best gift you could every give your caregiver and your family. I can tell you that it feels so good to get rid of stuff. Stuff you don’t need that somebody else can use.
Now I’m going to talk about being a patient. I was diagnosed with IPF, as I said in March of 2016 after a lung biopsy definitely indicated that I have IPF. How am I dealing with it? Same as you patients. None of us are guaranteed tomorrow. I know that intellectually, but it didn’t really hit home for me until I had the emergency surgery that happened out of nowhere.
I’m going to give you some advice that has cost me and you’re going to get it free. I see a clinical psychologist and have for quite some time, and he has told me to stay in the here and now and don’t go out there beyond today. I know that when I do, it gets very scary. Another piece of advice I can give you is that when you go in to that spiral of fear and anxiety, figure out how to get out of that spiral write it down on a card and then when it happens again, go back to whatever it is that helped you out and recreate it. I know it’s so frustrating to not have the energy to do the things you used to do with ease.
What I will tell you is this, to help you through the coming years and months is to make memories. Take every chance you can to do things with your loved one or your family to make lasting memories that will sustain them. One day, I received a request from my great niece who lives in Maine. She sent me a letter with a paper doll character called “flat Stanley.” Now the purpose of flat Stanley was to take him around your city and take pictures to show off what your community. You know, all the places you take visitors when they come in town. This was a project so the kids in her class could learn about different places. I was still working full time, and I had a very stressful job which left me exhausted and on the weekends that was the time that I used to catch up with rest and regrouping. So when I had to use my Sunday to take flat Stanley all over Louisville, I wasn’t very happy about it. Well my husband and I set out one beautiful spring day when the humidity was low, the sun was shining and all was good with the world. We started out taking a picture of my husband with flat Stanley at the Bell of Louisville, the Colgate Palmolive clock, the bat at the bat factory, Stanley watched a barge go through the locks where we took a picture, then we went out to Churchill Downs where, at that time, you could go around to the backside without being stopped and we came across three men standing in front of the one of the horse barns where there was a beautiful horse looking out of its stall. So we got out of the car and I walked up to them and said “could you do us a favor?” One of the men, “that sounds ominous” and I told him what we were doing and wanted to get a picture of Stanley with the horse, so he told us he was the trainer of the horse and the horse was going to race on Derby day not in the Derby but during the day. “He then said, stand over here next to the horse, and maybe he won’t bite you and then laughed.” I kept thinking the whole time one of the guys was taking the picture that I was going to lose my right shoulder. We thanked them and then we went out on the track and took a picture of Stanley with my husband holding him again, and then took a picture of Churchill Downs itself, and went on our way to the next stop which was Fort Knox. I got the pictures developed and wrote a narrative of where Stanley had been and what he had seen and sent him on his way. I got a call from my niece and they loved it.
Now the purpose of this story is to tell you how much fun we had and what a wonderful day it turned out to be. I am so grateful to my great niece for sending me Stanley because that is one of the days I remember so fondly. So do things together that will make good memories. Even if it’s just a few hours. Do something or go somewhere that you have always wanted to do or go, that thing that is on your bucket list. One of the things that I did for my husband is to take him on the Red Baron bi-plane ride which he loved as we had seen it many times go over our house. I know that Mike Olson is working on his bucket list. One of the things he has always wanted to do is ride in a helicopter and WLKY took him up in theirs. We have all heard that old adage to “live each day as if it’s our last.” I used to hear that and think ya ya, but now I think about it more. I think we all need to do that. Remember we are only here on this earth for a nanosecond compared to eternity. So whatever happens, we are only walking through this life for a very short time.
Folks, we can’t let IPF define us, we just can’t. We need to get up in the morning and keep moving forward doing things that make us happy, make us feel complete. One of the best things we can do is write down for our children and grandchildren things about ourselves of who we are and were, where we were born, funny stories, etc. There are books out there for grandparents to write down where they were born, what they liked to do, etc. What a wonderful thing to do for your family. You can just get a plain notebook that will do just as well.
I know it’s easy to get depressed. Boy do I know that. I grew up in a “half empty glass” back ground and I have fought that all my life. Somebody told these things to me once and I have always remembered them. First, “the things you go through, make you who you are.” Second, “remember God doesn’t speak in negatives.” That has been one of the most poignant things anyone ever told me and I have to remind myself every day of that because Satan loves to attack you when you’re tired or when you are down or when you are at the end of your rope.” He’ll lie to you and bring you down. What I tell him is to get back to the depths of hell where he belongs in Jesus name and he has to leave you alone. It doesn’t mean that he won’t continue to come back, you just have to keep binding him off. The Third thing I would like to share is this story. I had a friend who was the chair of the radiation oncology department at the Brown Cancer Center who, incidentally ended up being diagnosed with IPF, and I asked him one day, “Bill, how you can stand being with cancer patients day in and day out with the pain they go through?” And, you know what he said to me? He said, “Do you know who my best patients are? Little old African American ladies that know that when they die, they are going to see Jesus.” Our disease is what it is and we can’t change it. Now I’m not on oxygen yet but I know that when I have to, it’s going to get scarier for me and I’m going to follow these things; and if you don’t remember anything else I have said today remember these things — the Bible says that when we can’t pray, the Holy Spirit will groan for us. So when we get down, and the words won’t come, go to the Holy Spirit and he will intercede. At the end months of my husbands’ life, I didn’t know how to pray. I was going to the Holy Spirit a lot just saying to him, “I’m groaning,” John 16:33 says “I have told you these things, so that you may have peace. In this world you will have trouble. But take heart, I have overcome the world.” And last but not least, I know where I’m going.” So when things get bad I’m going to keep repeating “I know where I’m going and I suggest you do it too.” I’ll say it over and over, “I know where I’m going!”
I did it the other day and it brought me great peace and comfort.
At this point, I would like to take this opportunity on behalf of the patients to thank all of the clinicians, interns and researchers who are taking care of us and fight for us and for the nurses who facilitate the support group at UofL who support us and make those support group meetings, fun, and informative. We want to thank our visitors also for what you are doing to fight this devastating disease. We patients are issuing a challenge to those who are conducting research …. Find us a cure please!
Thank you and God Bless you all.
Ruth and her friend Anne Tinchner and Anne’s daughter Ellen at the summit.