I'm going to venture out where I rarely do, and be public and transparent about my health and some recent struggles. I'm usually very private about my health history, not because its a secret, but because I just don't think to bring it up with others or talk about it openly. I've had a lot on my plate as of late, and I've come to the conclusion that I have so many loved ones who could be praying for me and interceding on my behalf. Right now I need that army of prayer warriors lifting me up to the One who heals. I'm going to give a very brief history of my diagnosis, so if you already know this part of my story, maybe skip down a few lines! I was diagnosed with Lupus in 1997 at the age of 13, just as I was entering high school. Lupus is a systemic autoimmune disease that occurs when your body's immune system attacks your own tissue and organs. There is no cure. Obviously, this was a huge adjustment and it changed my life completely. Some aspects of it were very scary, but it also taught me, at an age earlier than most, to completely rely on God and to be joyful in suffering. I often refer to Lupus as the granddaddy of autoimmune diseases, as it can cause other secondary diseases to occur. In the fall of 2001, I developed a secondary disease called Reynaud's Syndrome; a condition that results in discoloration of the skin on the fingers and/or toes when a person is exposed to changes in temperature or to emotional events. The skin discoloration occurs because an abnormal spasm of the blood vessels causes a diminished blood supply. When the symptoms arise, although typically short lasting, it is extremely painful to the touch. Around the spring of 2014, I found out I had another Lupus induced disease, called Scleroderma; a chronic hardening and contraction of the skin and connective tissue, either locally (typically hands, feet, and face) or throughout the body. All of these combined proves to be very hard on my hands especially. If my skin is dry, because of the tightening from Scleroderma, it splits open and is very hard for it to come back together and heal. Lupus diminishes my bodies ability to fight infections and Reynauds diminishes the blood flow to wounds when they occur. At this point, any cut on my fingers is a guaranteed infection, often turning into an ulcer and usually takes around 6 months or more to heal. Of course, this is just one symptom I have with Lupus. There are many more that I deal with either daily or as they arise. Now that we're all caught up on my conditions, I can bring you up to speed on my current health situation. In mid September of this past year, I woke up with a severe Reynauds attack on my ring, middle, and index finger of my left hand. The fingers were purple and completely numb. Unlike typical short lasting attacks, this one is still ongoing. We tried a lot of adjustments to my medications for several weeks, to no avail. I was ultimately hospitalized in the ICU at Vanderbilt for a week to receive a five day infusion to try to increase the blood flow to my hand. The infusion was given nonstop, day and night, so I had to be in the ICU to receive around the clock monitoring from the nursing staff, as the medication could cause heart problems or losing consciousness. The infusion did mostly correct the color in my fingers, but they were still tingly and slightly numb at the tips. Before this whole episode started with my fingers, I had a tiny cut on my middle finger. Throughout these last five months, that small cut has turned into a huge ulcer, and a smaller ulcer has developed on the tip of my index finger. With those cuts I've been experiencing horrible nerve pain that shoots through my hand and fingers with no warning and it has been occurring several times every hour. The wounds themselves are extremely painful as well. I had temporary relief when I had a procedure done on my neck to temporarily numb the nerve that is hindering the circulation to my hand. The relief lasted only a week and the nerve pain returned. I've been going weekly to a wound clinic where they scrape the outer, bacterial layer of dead tissue off of the wounds with a scalpel. That pain was unbearable until insurance finally approved prescription strength lidocaine cream to numb the wounds prior to those visits. At my last visit, the wound on my middle finger was more than double the size from when I started at the wound clinic. The PT was conservative in how much she took off, because there's a worry the infection will spread to my bone. At this point, amputation of my middle finger is on the table so I wanted to try every other avenue possible before consenting to that. I was referred to a wonderful Thoracic surgeon who will perform a sympathectomy on Friday, January 31st. There is a chain of nerves that run along the spine, and the nerves in the T3 and T4 region effect blood flow and circulation to the arm and hand. Those nerves are hindering my circulation. The surgery consists of going in through my chest on the side, under my armpit. They will collapse my left lung so they can access the nerves completely, and then they will remove a large portion of those nerves, which will deaden what remains. At the same time, a plastic surgeon will perform a local sympathectomy at the base of my affected fingers to ensure blood flow is increased to them. With those nerves being deadened, the circulation and blood flow should be free to flow normally, which will help to promote proper healing in my fingers and hopefully avoid amputation. The surgery is only successful about a third of the time but at this point, I need to try every avenue available. After the surgery I will have to be hospitalized for 1-2 nights and then there will be around 3 weeks recovery where I will be very limited. Stephen has been amazing through all of this. He goes to work and as soon as he comes home he's cooking dinner, cleaning, taking care of the kids, folding laundry... the list goes on and on. The kids have been understanding for the most part, but at ages 3 and 6, they're limited in how much they actually understand. The emotional toll this has taken on me has been surprising. I've never dealt with continuous pain like this and dealing with it for months on end has resulted in a lot of tears and emotional breakdowns. At this point, I'm just exhausted emotionally and so completely done with it all. The thought of losing my finger is scary and disappointing, but if the infection spreads to bone I could possibly end up having to lose my whole hand, so I'm glad steps are being taken soon to try to remedy the issues. If I could ask you all to pray for healing for me and also for strength to deal with everything along the way. Please pray for my family as they are feeling the effects of this as well, and having to fill in for me when I can't perform my typical duties. Pray for the doctors performing the surgery and for a quick recovery afterwards. Pray for logistics as well, with Stephen having to work and the kids going to and from school. My ability to physically care for them has been very hindered through all this as well, so pray for stamina for me, and patience for them. There have been some very low days, especially as of late, where I am completely defeated and depressed. I am clinging to God's promises daily, but I need my army of friends and family to stand in the gap for me. Pray prayers of healing and strength when I just don't have the words to say it. If you've received the link to this site, it's because I very much respect your walk with God and would covet your prayers over me and my family. It's time for me to be open, honest, and totally transparent with my struggles and I praise Him for His church, the body of Christ, who will lift all of this up to Him in prayer.
I had my appointment yesterday with my own doctor from UofM. I feel much better after meeting with him. The wound seems to at least not be growing and the course of treatment we’re following seems to be keeping it at bay. Hopefully at this point hyperbaric treatment won’t be needed. He spent over a half an hour reaffirming and assuring me that this is not a “dooms day scenario” like the other doctor seemed to think. After talking with him I’m, again, so thankful the Lord has led us to UofM and the advanced methods of treatment they offer for the less common symptoms of my illnesses.
I would really appreciate your continued prayers for the wound to heal. It will be slow going, but I’m much more optimistic about it now that it’s not growing or swelling anymore!
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