The Facts
Around the beginning of September I played a pretty tough tennis match with my sweet friend, Christy. It was tough for me because it was hot, hot, hot and I was getting weaker by the game. I looked at her and wondered why I was tanking so! As it turns out, I never recovered from that match and within the next week found myself in the hospital with pneumonia. No wonder I couldn't breathe on the court! After lots of tests and even some guesswork, it was determined that I had pneumonia simply because I was on Humira (bc it suppressed my immune system). After I left the hospital, I still didn't have answers or even a plan and met with many -ologists. I went to an ENT to determine if I had sinus issues and apparently that was it, unbeknownst to me. What I loved most about my ENT was that she was the only doctor who didn't just blame everything on my Crohn's or the Humira, as every doctor to that point had done. She ultimately discovered I had a major sinus infection that would continue causing pneumonia if I didn't nip it. I was so grateful, as she was the first doctor to keep pressing for a cause. Unfortunately, her solution was to give me an antibiotic called Clendamycin. Take note...never EVER take this drug. I was warned it would be hard on my tummy and within a few days was vomiting profusely due to the antibiotics. However, I didn't want to go back in the hospital to get an IV, so I forged ahead. It was brutal. Within a week after finally completing the antibiotic I got CDiff. I was aware it was a risk and I knew the exact moment my body changed. I called my GI and told him to test me and sure enough. I was positive. He gave me a script for ANOTHER antibiotic (4th at this point) to get rid of the CDiff. At that point, my body was so weak. I refused to take another antibiotic until I was about 5 days into CDiff (on a Saturday no less) and was grateful for that "just in case" script. My GI referred me to an Infectious Disease doctor who actually extended the length of the antibiotic by 4 days. I never made it that long. I could not take the nausea anymore. My last pill was the week of Thanksgiving, so I had been nauseated and sick all of September, October and for 3 weeks in November. I was done.
My Truth
Since the day I went to the hospital in September for pneumonia, we have been loved and supported and prayed for by an amazing amount of people. Not only those who are family or known us for years, but this wonderful family of friends we have here in The Woodlands. Our friends immediately jumped into action to help Babe at home with the kids and feed them in my absence. They came to me at the hospital. These are all things I would do in a heartbeat, but to be on the receiving end of such love and compassion is a lot to take...especially when it seems like we have needed it for an extended period of time. When you are used to taking care of everyone else, it is extremely humbling to be taken care of yourself.
The difficult part was that since I took that Clendamycin, my stomach was destroyed. I was/am in chronic pain and vomit on a regular basis. I live in a world of nausea even off the medication. It has been a very difficult time for me enduring it and my family worrying about me. Thru it all I have been balancing my business and my family and not doing a very good job of either. Every time I get sick, I feel like it couldn't get worse. And every time it does. The pain in the last few months has been unbearable with the nausea mixed in. I carry a barf bag with me every where I go. It's really classy :) Whatever I have, be it Crohns Disease, Candida issues, or CDiff, it is a very painful and brutal disease. There are no words to explain it so that those who don't have it can understand it.
Babe has been my saving grace. With every ounce of my being, I do not know how I would have survived this struggle in my life without him. Each time I turn around, he has not only made me the proper food to eat to keep me healthy, but he has made delicious food to keep me healthy. I have told him many times that there is no way he can "go" before me. He has pulled me out of pits day after day...pits that I didn't have the energy to climb out of myself. We have prayed our hearts out over me which is hard for me. I don't know how to pray for myself. When I am in so much pain, I just cry, "Jesus!" I love that song that says, "When you don't know what to say, just say 'Jesus.'" I say, "Jesus" a lot! We finally reached the point where we admitted that we needed help. It was time.
I called my church and made an appointment with our pastor to pray with us and for us last week. I had no idea what to expect, but I knew we needed some super powers involved. Our meeting was so much more than I thought it would be. Babe was home with me that day, so we both got to go. Our pastor asked a lot of good questions about Babe and his role and my illness and how it affects us and our family. To say there were tears shed is an understatement. Babe and I are solid and united and ultimately so much closer for the trenches we have been thru, but that meeting was so purifying for each of us to cry out to someone else for help. He prayed over us, anointed us both with oils and we are set to meet with him weekly. I have high hopes for those meetings.
Thru all of this and the testing of my faith, I go back to Job...a lot. I have never been angry with God, as our pastor inquired. I just want to be sure that thru this awful time that the Glory be given to the Lord. I know that I am sustained daily from His strength alone. We both know that God is working thru us and there is nothing more emotional to me than to know that God is using ME to do something for His kingdom. I still beg for healing, don't get me wrong. I often cry out asking, "WHEN IS THS OVER?" But ultimately, God is in control. I dream of a Heavenly body...with no pain and no suffering. We have outwardly discussed the "what ifs" which are hard. Babe fears losing me and I fear my children growing up with a sick mom or without a mom at all. But all these fears are not ours to bear. When I start to worry, my stomach hurts more and it is ultimately a downward spiral for me. I can't go there. I don't mind giving those fears up to the Lord.
What I do know is how my disease has changed my life. My perspective is one of necessity.
1-Good health...every day is a blessing to be without pain. There are some days that I count hours as blessings without pain.
2-Food...Babe is all I have to say. He is the best cook and my daily supporter thru cooking whats best for me, doing, praying, loving.
3-Family...every moment that I am down is time away from my boys and I often feel a LOT of guilt and anxiety over what my children are missing because of me. That part is tough. But what I have seen a glimpse of is their appreciation for a healthy mom when I am healthy and their compassion for me when I am ill. I get head rubs, foot rubs, plates of mini wheats and half eaten pretzels. :) All things I can't eat, but certainly make me feel better for the TLC.
4-Friends...there is no way we could have survived to this point without our friends. No way.
After those 4 things...nothing else matters. It really simplifies life when you are just clinging TO life.
This morning I woke up sick. I was miserable and strangely enough, I rejoice when I can throw up to get some of the pain to go away....I threw up. It is Sunday and Babe had to work, so I used every bit of energy I had to get the boys and I to church. I wanted so desperately to be at church worshipping in the sanctuary. I walked into that sanctuary nauseous, unsure if I would have to run to the restroom. I prepared JBS to watch the other two if I did. As we stood for our first song, I started to cry and then sob. My kids were staring at me not knowing what to do. Sweet JBS said, "Does it hurt that bad Mommy?" Which, of course...made me cry more. There was nothing like that time this morning, though. For one, the sermon was about how we fail to call on God to take over when we need it. Trust me, Lord, I am calling your name! And when we left, I called Babe to say that the entire time I was in that sanctuary I was without pain. I had a spiritual experience that I am not sure I have had before, but in that sanctuary, I felt like I was standing in the presence of God. The Holy Spirit was there. I was so emotional and so relieved at the same time. As we walked out and got in the car, my pain returned. I wanted to stay there all day.
My Hope
Two years ago, one of my dearest friends from college introduced me to a Fecal Transplant (FMT) and I have been asking for and studying this procedure since then. As the time has passed, my doctors have become more open to this procedure for me. It is ultimately placing the healthy bacteria of one person into the colon of an unhealthy person (me).
This procedure is only approved in the US for someone with CDiff. Before I had the CDiff diagnosis, I discovered that it was only approved in the US for CDiff, but I could fly to Australia where there was a pioneer doctor using it to treat Crohns Disease! I emailed them only to discover, that venture would be nothing short of a $50,000 and 8 weeks away from my family. It was so discouraging to know there was something out there than could help me and to be so desperate and not be able to get it.
In my years of researching, I discovered another doctor in Oklahoma, of all places that is a leading researcher in the procedure. I was also in touch with my GI at Mayo Clinic in Rochester, as well. Each of them said it was not indicated for Crohn's yet and they couldn't help me. Huge disappointment.
SO, if you can image my joy when I received a CDIFF diagnosis! Most people would cringe, but I had the paper in my hand to say I could get the procedure! I called John and my parents with tears of joy..."I HAVE CDIFF!!!" It's a terrible issue to have, but truthfully, it doesn't come close to the other issues I deal with. I am not kidding when I say that I think that CDiff was my answer to prayer. I had desperately prayed for a way to get that procedure and if getting CDiff is how God is helping me get it, so be it!
It took some time for me to heal to get researching to find out where I could go....for real. I first contacted the doctor in Houston and exchanged a few emails with him while I was waiting to hear from the doctor in Oklahoma. The doctor in Houston responded with "How many times have you had CDiff?" {isn't once enough???} Then, I discovered the doctor in Oklahoma was no longer in practice and am guessing he retired. Ultimately, I received an email from Houston saying, "Give your meds a chance to heal you. 75% of patients with Cdiff are cured with their first round." I was heartbroken. I read that email every night and finally typed out a last ditch effort email. I gave him my history of Crohn's and Candida struggles, tugging at heartstrings and anything else I could muster and pushed SEND.
The very next day, I received an email from the doctor's assistant with attachments of all the papers for the procedure! Holy Hannah! I just completed those papers and will send them off today. There was a section that said that they are not approved yet to treat Crohns, but are taking applications for when they are. I have no idea if he sees me as a Crohns patient or a CDiff patient, but I have never been this close before. And even more so...not traveling across the world, but right here in my own town.
Final Thoughts
It occurred to me as I wrote that email that I am now 40 and my struggles began in college when I was 20. I have been fighting this battle for half my life. There are lots of things I hate about it. I hate that people worry about me. I hate that people feel the need to ask me how my health is all the time. I hate the pain it causes me and my family. I hate not being able to eat at social functions...or at all. I hate missing out on days at a time when I can't function. I hate it. Illness is from the devil and its his way of trying to take me down. I am stubborn and I refuse to be taken down! I fight for my kids and I fight for my family. I fight because I know that God has bigger plans thru my disease. I don't know what they are. I don't know when or how this story ends, but I know that somehow God is working His purposes thru me and Babe and how we grow thru this together.
I am so grateful for ALL the "togethers" I have in my life. God is so good.
I have never been weaker, but know I have never been stronger.
