I thought I'd start this site to help everyone understand what has been going on with me, and since my energy level is super low lately, I thought it would be good to have one place to update everyone without too much effort! Thanks for all your support and the many prayers!
I've been struggling with chronic illness for the past 7 years without a clear diagnosis or treatment plan, and I've been getting increasingly sicker. It's hard to explain the sickness, because it doesn't fit into any ordinary description. It started with my stomach becoming paralyzed, and my intestines have continued to slow in the process. Four years ago I had a feeding tubed placed while I was pregnant because I was unable to meet any nutritional needs. Since then I have had the muscle at the bottom of my stomach removed to allow food to pass into my intestines without the need for normal stomach function. Now it has turned into a huge range of symptoms that include severe nausea, vomiting, muscle weakness, exercise intolerance, episodes of intense pain, and dizziness just to name a few. I am a very active person, so I do struggle with the fact that I can't keep up with my lifestyle and what I would like to be able to do. With the energy I have I use it to play with my girls Kristen and Hannah. They are used to me being sick, as it is all they have ever known. They are such wonderful blessings, and couldn't imagine my life without them. This has been such a long road for all of us. Earl has had to help in so many ways, and is often my nurse and husband in one. I am grateful for all he does for me.
I have not been able to find a diagnosis for my illness, and we are traveling to the Mayo Clinic in Scottsdale, AZ; in hopes to finally have some answers and hopefully get some relief. This is my biggest prayer, to finally have an answer. I really hope that this trip will bring that for us, as I am pretty tired of the guessing games, and countless doctor's appointments which are a waste of time and money at best.
This has been a very hard time for us as a family facing all the difficulties that come along with this. Emotionally we are tired, physically we are worn out, financially this is a burden, and fearful of many unknowns. We also struggle with the fear in my mother's illness as she is approaching a double brain surgery. Our hearts are heavy, but our trust is in the Lord.
I am grateful to all our friends and family who are truly awesome, and supportive of us through these tough times. Please continue to pray for us that this will be a time of healing for our whole family.
Do not fear, for I am with you; do not be afraid, for I am your God. I will strengthen you; I will help you; I will hold onto you with My righteous right hand. Isaiah 41:10
Jul 15, 2010 5:28pmI have some great news to share with everyone - thankfully & finally!!!
I now have a diagnosis eventhough the doctors cannot even believe it, it seems so far fetched even to them. I have sphincter of oddi disorder type 1. This is the sphincter that connects the bile ducts from the liver and pancreas. This is what they thought even before the surgery, but the doctor who performed the procedure did not think that this issue was related to all the other problems that I have had prior to this nor would it have anything to do with the problems in my muscles. I will try to share about how everything has turned around since.
The mornig of my surgery was by far one of the worst days I have had all along. I was in so much pain that morning I couldn't even get out of bed until right before we needed to leave. I was so miserable, but as we were driving to the hospital I had my quiet time and God gave me a peace about the procedure and the hope and assurance that everything would be taken care of with this procedure. After I was all prepped for the procedure I got to ask the doctor some questions as to how this all could be related and he did not even give it a second thought but said absolutely not, this doesn't cause this mass of symptoms. But....God had something else in mind entirely and I am glad He is my true Physician!
The procedure went quick, but not painless! I woke up in a lot of pain at the site of the cut sphincter and it took a couple hours to get the pain under control. By that afternoon I did feel different but couldn't really put my finger on what or how. I did not end up getting pancreatitis, thank God, but had normal pancreatic enzyme levels! My liver enzymes raised considerably, but that was just due to the surgery. I was able to eat the next day and keep it down as well. I was discharged late the next night thankfully as I was exhausted and they just don't leave you alone long enough to get some good rest.
I was amazed that the morning after we got home my eyes looked bright again. They have been off and not quite bright white since October, so this was a sign of hope. My muscles were also less painful than they have been in months, but I was a little skeptical because I wondered if it was just from all the resting I had done over the past two days. Over the next week I felt waves of nausea and dizziness, and faitgue, but I knew that something had definitely changed within me. I had more energy than I have had in months, even though I still need quite a bit of rest. I also have had less pain in my muscles and in general feel much better.I have also had true hunger, and have been off the couch!
A week after the surgery I talked with the doctor who performed the procedure and he was amazed that everything was getting better. He couldn't believe that even the pain in my muscles was better. He said that if I ever had any issues again that I would just need them to go back in a cut it again since there is a small percentage it would close back up again. It was explained to me before I came home that my bile ducts were severely dilated and that it caused a back up of bile to be stuck in the ducts because the sphincter of oddi did not allow it to pass down. So it turns out that all of the toxins that were suppsed to leave my body were atually flooding my entire body and overloading my system. I have toxins everywhere and that is why my organs have shut down and not worked properly for years. That is why my muscles burn and do not work as they should, and why I feel awful!!! It is unbelievable that this was not found out sooner, and more unbelievable to have this amount of prblems from one sphincter in my body not working properly.
I have done more in the past two weeks than I have since November! Our family got to spend a few days at Wind River Ranch and just rest and relax after our crazy year. It was so nice to even be able to go. Just for me to go was a miracle. I also got to swim and even ride horses for a short time. It was a few days filled with miracles! I got to eat a regular (not organic and not a small amount!) steak for the first time in almost 7 years! It was soooo wonderful. I spent that week in awe and amazement and totally grateful to God.
It will take months for all the toxins to be flushed out and then my body can release all the dead cells in my muscles & organs, and then it can regenerate new cells and start my body functioning as it should. I feel so much better now and no it isn't great or even good yet, but I know that it will be soon. I am just so thankful that it is better than it was. I have so much hope and I know that I am going to feel better than I ever have in my entire life. God saved my life that I do know. If they hadn't caught it in time the rest of my system would have shut down completely. I am so glad that I can truly live to enjoy the life God has given me. I can have a more joyous relationship with my husband and am grateful that I get the opportunity tho see my girls grow up. I can play with them now and take them to do fun things. I am enjoying every minute of my new chance at life. I have to work hard at therapy to try and regain what I have lost, but I am already not using my cane! Awesome!!! Every where I go people are telling me how I look so much better than I have in a long time. It is encouraging to see a change for the better. So in the next coming months I should be feeling better and better.
Thank you for your continued prayers for healing and for our family. We serve a God who hears us,who does do miracles today and extends His mighty hand to us who are in need. I will praise Him for what He has done and what He is about to do in my life. Glory be to Him the only One who truly deserves it!
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