We were on Cloud 9 after we made it to Day 5 and saw the heart in the bulb of my drain. We drew great comfort from that and ANY sign that encouraged us that I was going to improve, go home, and be "Penny" again. BUT there was still one major hurdle to jump. There was still a questionable pocket of fluid in my lower abdomen.
This pocket of fluid previously had a drain in it that was inserted outside of surgery by an Interventional Radiologist. They took me to CT and inserted the drain by taking pictures, inserting and using the CT scan to assist to ensure it was placed properly. I was scared, but in the end it didn't hurt that much to put IN. Now, pulling it out was another story. I did not want another drain placed there because it would have been the same method and the removal was a bear. Quick, but a high-pitched scream kind of a moment. It also meant going home....but with a drain. I just wanted to go home with as few attachments as possible.
My surgeon ordered a CT scan of the area where the pocket had recently been seen. It had been there all along, in all the CTs and didn't disappear even after the drain had stopped draining. It was very stubborn. He said if it was the same size or smaller, then we wouldn't worry about it. As you can imagine, I didn't want it there AT ALL. Even if it was smaller, it was still a potential breeding ground for infection that I had had plenty of. I wanted it GONE! So, we began to pray. We spread the word, yet again, to pray for this pocket to vanish, disappear, be GONE! Please, please, Lord, I begged! Please let this be gone. I was so fearful of going home with anything remotely close to having potential for infection. I always went back to the fact that I was "near death septic" and I was walking, driving my kids, feeling tired, but OK and I had no idea how sick I really was. I didn't trust myself to know the warning signs if things went bad at home.
A dear friend of my mom and dad wrote a prayer to me and included "Rapha Father". I know there are multiple names for God and each has a different meaning. This is certainly something I want to dig deeper into now, but at the time, we learned that "Rapha" meant healing. I held onto this and regularly prayed for Rapha Father to heal me.
When it came time for the moment, the "big" CT, I was scared. I have had so many procedures and even surgeries in my life and never truly felt fear like this. I didn't want to be in the hospital any longer, I was worried about my boys, I was tired of being sick and fighting for my life. I was just tired. I was transported back down to my very familiar CT room for the scan. Of course, by now, I knew all the techs in the department and they all greeted me. "You STILL here?" one of them said. I scooted over to the scanner and tears just streamed down my face. Yes...I was still there. STILL. All I could do was say, "Rapha!" and then I just started naming all the names for God that I could think of, "Emmanuel, El Shaddai, Elohim, Jesus, Father, God..." And for the next fifteen minutes I was moved in and out of the scanner and I just kept repeating the names of my Father in Heaven. I just closed my eyes and whispered over and over again. Amazingly, just saying those names, I stopped crying and found a great peace over my entire body. "Heal me. Rapha Father. Heal me."
With previous CT's, as I left, I looked over my shoulder in the computer room to see what was on their screen. I could always see multiple white balls (abscesses) scattered all over my abdominal cavity. I didn't allow myself to look this time for fear I would see an old scan or see something that was really nothing. I kept my eyes straight forward as I was wheeled back out the door and to my room and continued to pray that my CT scan was clear.
Later that afternoon, my Infectious Disease doctor rounded thru my room. We loved him. He was very amiable and joked with my kids when they were there. He loved me and took great care of me. He was as important as the surgeon as he was in charge of the antibiotics and killing all the infection we couldn't see with our eyes. When he came in he started to talk then stopped. He said, "Has anyone told you about your CT yet?" My Dad was with me and we both blurted, "NO!" We had no idea it was back and the surgeon hadn't been by yet. "Please tell us!" I hung on every word he said. For a moment and the way he asked that, I thought it was time to make a plan for re-insertion of the drain. But in his next breath, he said, "It's gone. The scan looks great." I just stared at him for what seemed like forever as he went on talking and I interrupted. "You are telling me that the pocket we are worried about has completely vanished? It's no longer there?" And he said, "Yes!" And believe it or not, I cried. And I looked at my Dad and he was crying....another non-surprise. We cried A LOT! Tears of joy for my healing and tears in awe that our prayers were answered and tears that we had no doubt that we had just witnessed a miracle. It wasn't the same size or smaller...the pocket had VANISHED!
Praise GOD! Rapha Father, healing Father, Elohim, El Shaddai, JESUS!
Thursday, August 20, 2015
God Moments: The Heart
By the fourth week in the hospital, I was growing discouraged. We needed a lift and we needed it in a physical change kind of way. I was basically sitting in the hospital recovering from incisions, allowing them to drain and praying that the infection went away and the damaged areas were repaired. It seemed like this could take forever. There was no end in sight.
I like dates, parameters and measurable goals. I asked him when we would know we were "in the clear" since this was now the second drain in the same place. My surgeon said that usually by 5 days we can feel pretty confident that the infection is gone. He told us that if that drain stayed clear we could start discussing sending me home. (Holy Hannah! I could have leaped from bed and kissed him at that point.) There were still some other things to work on over the next week, but nothing that wouldn't allow me to go home. You better believe we had a countdown going for those 5 days. Every morning, Mom took a picture of the bulb to report that it was still red and bloody vs white and infectious. This we celebrated every day. She sent it in a text to everyone in our family. This might be gross for some, but for us, "Red" was health! "Red" was healing! "Red" meant I was close to home! I didn't even think about what the alternative was. We were focused on red. We made it to Day 2, then Day 3, and Day 4. One doctor's opinion was even that we passed Day 3 meant it was pretty good. But we still focused on Day 5.
I woke up early on Day Five as I did every morning. The nurses had been coming in all night. New shift started at 7am, so the night nurse was hurrying up to finish her work on me. It took me some time before it registered to me that it was Day 5. I scrambled in my bed to find my drain....and this is what I saw:
Yet another promise to me that I was going to be OK. There was never a day where there was anything remotely close to a heart in my bulb. But on Day Five, there was my heart, my promise that I was going to be OK. I quickly showed my mom, who took a picture and blasted it to the whole family. We. Made. It. And the heart sealed the deal. And we both cried. :)
Another lesson I have learned thru this trial is that God is everywhere. He is in everything. But if you aren't looking for Him, then you will never see Him.
If I am trying to be poetic, I could take the lesson to be that Jesus died on the cross for me and thru his blood I am saved because He loves me so much. So, the heart in the blood draws all new parallels.
Once again, we received confirmation even thru small things (that were BIG to me!) that God had this!
God Moments: Amazing Prayer (Part Two)
From that first night of prayer, I mentioned that two things happened. First was the Refiner's Fire moment and second was my own vision. As we were praying, my friend asked me what I saw. This is an eyes closed vision. What was in my head? All I could imagine about going home was sitting on the front porch watching my boys play football together. Ahhhh....pure bliss.
Every time we have moved, I always look out the window and visualize me sitting there watching my kids play. Even before we had kids, I was pregnant and we were looking at houses. While we looked at the house we ended up buying, I stood in the utility looking over the desk (the desk that would be mine) and out the back window and I could see my future child(ren) playing in the back yard. I had that same serene feeling when we moved to this house. Our front yard is large and perfect for the boys to play ball. It's a very happy vision for me.
As he was praying for me, he asked me what I saw while I prayed. What was I seeing in my head?
As he was praying for me, he asked me what I saw while I prayed. What was I seeing in my head?
When I told him what I saw, he probed a little more and asked what else I saw. I saw my dog, Mona :) He asked me this time if I was IN the scene. I told him I was on the porch swing looking out, but I could not see myself in the picture. He asked that I put myself in the scene and then asked what I was doing. I was playing football, of course.
"Anything else? What else do you see?" He asked. What stood out to me most were big rays of light coming down thru my trees that shone on my yard. It was warm and relaxing. I was certainly not poetic at describing what I saw, but I felt the warmth, the peace and I could hear their laughter. That was my happy place.
He told me to keep that vision in my sights until I got home. You better believe I did. Any time I had a painful procedure or had a hard day missing home, I just held on to that vision of us playing football together in the front yard....with the beautiful light coming down between the trees.
Fast forward several weeks....Praise God, it was my first week home! I was sitting on the porch with Babe, enjoying the moment being home and with my family. Then it hit me....THIS was my vision. THIS was my picture that I clung to in the hospital, down to the rays of light in my front yard. Even as I describe it here, I don't feel that words do it justice. This vision was from the Lord and in just a few days of being home, here it was before me exactly as I had pictured it in the hospital. Exactly.
Through all the ups and downs, God has been present. Present in a variety of ways, but little things that I feel were a "promise." Maybe everyone doesn't see it as I do, but I know. I know He is there and guiding my every step. Life has changed considerably for me since my hospital stay. My perspective is wider. I don't get flustered with the little things...or the big things. I appreciate everything....like walking, having good lung capacity, no pain, laughing with friends, playing with my kids, even cleaning my house. What a joy to have a house to clean!
God is certainly present and this moment, this picture, was Him just winking at me saying, "I've got this!" And I am so glad He does.
God Moments: Amazing Prayer (Part One)
It was probably after my second surgery that I finally had my blinders removed and realized that I wasn't going anywhere quickly. I had slow improvements in my numbers, little bits of encouragement here and there, but nothing huge. If a doctor came to my room and told me ANYTHING about improvement, I clung to every word he said!
It all left me speechless. Whether I could SEE Him or not, the Holy Spirit was present in my room. Take it or leave it, two experiences (seeing the fire and feeling the overwhelming heat) matched up between two different people. What it did for me was to encourage me and use all that I am going thru to bring Glory to the Lord. The Refiners Fire does not exist to hurt or destroy but to make better, stronger and more pure. I knew then that I would survive this mess. I just had to stay focused on my healer and continue to give thanks for all the blessings in my life.
I will never be the same.
By then, I was very tearful. I was overwhelmed by the people that were getting in touch with me to offer their encouragement and prayers. My parents would get emails daily that they shared with me about another person or group praying for me. My sister sent me emails and notes on Facebook that she received from her friends and some of my old friends offering encouragement. I had so many texts and emails on my phone I couldn't keep up. Everyone wanted to help, but truly, the only and the BEST thing they could do for me was pray. We were living on prayer and the peace that came over me multiple times was distinct and powerful. I knew someone was praying for me then. I wanted those prayers. I begged for them. PLEASE pray for my healing.
The dearest of friends' husband has a pretty amazing testimony himself about a group of men he meets with weekly to pray. I am not talking about hold hands, Kum-ba-yah, say a prayer and be done kind-of-group. These men have powerful prayer, emotional prayer. They don't always know what they are praying for before they meet, but something always comes up. They could spend hours in prayer together. I have always been interested in their group. I am fascinated by his story, as well as the power of their prayer. My friend texted me to tell me they prayed for me one night. Then, they asked if they could come to the hospital to pray for me. Overwhelming YES!
What happened in that room was nothing short of divine power. As I tried to explain it to my mom and dad, I realized that there were no words to describe the emotion, the feeling, the power that we felt as these men prayed over me and Babe. Each of the men have their own unique spiritual gifting. It's really fascinating, but I couldn't do it justice by explaining. I do know that my friend's husband can often feel or see things that we don't see. He doesn't talk about it in a way to brag or even discuss it with people that might not receive it well. I believe what he says because I know him and I know his character.
That evening about 4-5 men and my friends oldest son (13yo) descended upon my hospital room. I was so excited to have them in my room. We took a few minutes for pleasantries and then we got to business praying. Babe was at the foot of my bed and the rest of them circled around my bed. Apart from the "feeling" I had during that prayer, two distinct things happened. One I heard a few days later and one came to fruition after I was home.
My friend's husband and one of his friends came back at my request to "rehash" what happened the first time. I wanted to know what he saw or felt. What his take away was from our time in prayer. The most impactful thing he told me was about what his son saw and what he actually felt. Every time they said my name his son saw fire flash behind my head. He SAW this. (This is a precious boy who has shown signs of possibly having the same unusual gift as his dad. He is young and doesn't know how to interpret any of it, but gratefully has his dad to communicate with about his experiences. For both of them I will say, the "visions" don't happen all the time or on command. His is almost always thru the power of prayer and he takes great care to ensure that it is from God and nowhere else.) His dad didn't know that at the time, but his dad was up by the head of the bed and he said he was sweating profusely. Like, he had to wipe the sweat from his head while we were praying. None of the rest of us were hot at all. He FELT the fire his son was seeing.
The interpretation of this could possibly go anywhere. When I asked him how he interprets what he sees, he simply states that it is thru prayer to ensure that what he interprets is true. This is a HUGE subject and I know could be off-putting to some. Like I said before, I know him and his character and his amazing faith that I trust him and what he has to say. I also believe that there is a spiritual world out there that we can't see with our own eyes. His opinion was that it was the "Refiner's Fire" mentioned in the Bible multiple times (Zechariah 13:9, I Peter 1:7, Isaiah 48:10)
From John Piper's Desiring God:He is a refiner's fire, and that makes all the difference. A refiner's fire does not destroy indiscriminately like a forest fire. A refiner's fire does not consume completely like the fire of an incinerator. A refiner's fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact. He is like a refiner's fire.
It all left me speechless. Whether I could SEE Him or not, the Holy Spirit was present in my room. Take it or leave it, two experiences (seeing the fire and feeling the overwhelming heat) matched up between two different people. What it did for me was to encourage me and use all that I am going thru to bring Glory to the Lord. The Refiners Fire does not exist to hurt or destroy but to make better, stronger and more pure. I knew then that I would survive this mess. I just had to stay focused on my healer and continue to give thanks for all the blessings in my life.
I will never be the same.
God Moments: The Anatomical Details
This post turned out to be more details about my surgeries than I thought I would give ;) Be warned, its detailed and probably boring, but helping me to get my facts straight!
We originally thought that the infection had occurred because my open and non-healing incision had a bit of exposed mesh from a previous umbilical hernia repair. Apparently, the mesh used is safe until exposed and can cause serious infection. We went into surgery anticipating the removal of a piece of mesh. But oh how things changed!
They removed the mesh without a problem, but having seen first hand the amount of infection and that it was all over my internal organs, my doctor expressed the gravity of my situation. I am pretty sure I blocked that out or I wasn't informed because I still thought I was going home soon! There were pockets of fluid all over my insides that had become infected. He saw an area around my duodenal stump that looked unhealthy and like a possible leak. He tried to replicate the leak with no success. He was very disappointed, but also reporting how much of the infection they removed...manually. They went in with CT results in hand and removed, scrubbed and flushed my abdomen over and again to remove all the infection. He said every organ was washed and scrubbed. Infection. Was. Everywhere. They closed me up feeling like the infection was hopefully resolved, but still questioning a leak. They were not convinced the mesh caused my issues at all.
I am not sure if I don't remember Surgery #2 or if having 4, I just have them all confused. Surgery #2 took place because via CT there were still a few pockets of fluid that could potentially become abscessed if they weren't already. In that surgery, they found a small leak in my colon. They felt that it was always there, but so small at the time of the first surgery that it was difficult to isolate. They also still did not like the look of the duodenal bulb and discovered a bile duct had been cut.
My new surgeon was very respectful of the previous surgeon and at least attributed the colon possibly to clamps used during surgery. I believe that to be true, as my surgery wasn't any where close to my colon. The other issues....the biggest issues we dealt with...I have a hard time believing it to be relating to clamping. The bile duct was really still in question as they hadn't isolated which duct it was and if it was a smaller periphery or if it was the Common Bile Duct. The Duodenal bulb was so unhealthy that he couldn't stitch it and still could not replicate a leak. Bottom line, I was sick and there were still a lot of questions. They repaired all they could, still not confident in total repair.
Surgery #3 occurred when it did because of an excellent nurse. It would have eventually been discovered, but she caught it early. At one time, I had 4 drains across my abdomen. I joked and called them my basket of eggs when I had to stand up and move. I had to stay light-hearted as I looked like a cactus and felt like a pin cushion to the 100th degree! All the drains were draining well except one that looked infected. They really had their eye on that one. I returned from a procedure and stood to walk with my nurses help. When I sat down, something leaked out of the holes of the three healthy drains that were across my lower abdomen. My nurse grabbed a gauze and excused herself to speak with the charge nurse. At that moment, my surgeon walked in and said, "We have to go back in." It was stool and it was freely moving about my abdominal cavity. At this point, I remember feeling desperate. We HAD to find the leak! I was also so tired and in so much pain. The thought of them opening up my incision for the FOURTH time (including my original surgery) just made me hurt even more. It was a successful surgery. They never found the leak, but knew it had to be coming from the duodenal stump. They used a special powder that acted as a cast or super glue that would seal whatever microscopic leak there was until it could heal itself. They also scrubbed, scrubbed and scrubbed the area where the bad drain was located and replaced that drain with a sharp eye on that area to ensure the infection was gone.
In between those surgeries were many CT's, a Hidascan, so many blood tests, other tests, at least 8 pints of blood, wound care. Oh the wound care girls. They were so nice, but caused more pain than I could stand. I had to be pre-medicated when they were on their way and screaming could be heard during the dressing change. I had to have a family member with me each time to hold my hand because it was brutal. Pain meds didn't touch the pain. Monday, Wednesday, Fridays were their days to visit and certainly not a part of the good things I want to remember. BUT....those girls on the wound care team were so good, encouraged me so much and I felt so confident in their skills and my healing wound every time they came for a dressing change. Sadly, after every surgery, we had to start all over again. They do deserve mention because they were the girls I loved to hate, but I loved them so much for all they were doing to help me heal.
God Moments: The Big Decision
So much of my hospital stay is a blur. But there are distinct points that I remember that were very clear to me that God was in control.
The wound care doctor was at Tomball Regional Medical Center. My original surgery was in Houston. I had returned twice to my original surgeon expressing concern over my wound and he was nothing short of apathetic. No plan and no concern was expressed. The wound care doc in Tomball took one look and admitted me to the hospital.
After I was admitted to Tomball by the wound care doctor, I was coincidentally discussing the plan with the Tomball surgeon at the exact same time Babe was talking to the original surgeon in Houston. In the two hours I was allowed to get a bag, my mind was racing as to what we were supposed to do. This was a HUGE decision.
1-Do we return to the original apathetic surgeon in Houston? This is a long drive for my family. He got me where I am. His communication is terrible. He released me from the hospital with temperature spikes and high white blood cell count with no concern. BUT....Houston is the MECCA for health care.
2-Do we stay in Tomball? The surgeon was extremely thorough, had a plan, excellent communicator. And you better believe I asked every nurse, aide, and tech what they thought about him and not one person said anything but praiseworthy things about this surgeon. One doctor even said, "He's the trifecta. He is wise, skilled and has good bedside manner to boot." My kids and family are close. But this is Tomball, Texas? Population: small!
I called Babe immediately. He told the Houston surgeon that I was covered up in infection and my wound wasn't healing. He said the Houston doctor said, "I guess you should just transfer her down here." And that was it. I told Babe that I had prayed so hard in those two hours and I had an overwhelming peace about staying in Tomball after talking to my doctors. BUT....I wanted it to be a decision we made together. I needed confirmation of my peace. Babe was in total agreement.
Our decision to stay in Tomball was confirmed over and over again. Praise the LORD for that overwhelming peace I had about staying in Tomball. My surgeon was exactly what I had been told: The Trifecta. He had a nurse practitioner that worked very closely with him in surgeries and patient care. Their time with us was never rushed. Between me and my family members we had hundreds of questions and they just took a seat. Their confidence and communication was exceptional. We had to talk thru a lot of surgeries, difficult choices and potential issues. Their time was ours. We felt the same about my assigned Infection Disease doc, as well as my Gastroenterologist.
I had many different nurses on three different floors and every single one of them was amazing. Not only were they compassionate, but skilled. Two nurses that I remember specifically caught some very potentially dangerous issues....one that sent me to surgery for the 4th time just as they were considering releasing me. Praise GOD she caught the leak I had thru my drain. I had so many antibiotics going that I had two IV poles. I was a difficult patient simply for all the meds that I needed every shift. For the most part, I had a nurse in my room all the time for all the work they had to do for me. I can count at least 5 nurses that either prayed with me or told me they were praying for me. This was not a Christian hospital. They were just amazing on their own.
Even the anesthesiologists were wonderful. Having gone to surgery a total of four times at TRMC, I became a "regular" in the operating room. By the second surgery, they all greeted me and waited on me hand and foot. I don't think I was an exception. I think they just took that great of care of their patients. For my last surgery, that was simply a closing of my incision (it was open and with a wound vac the entire time I was in the hospital) and pulling of a drain, they all high-fived me that I was on my way to healing. Of course, it wasn't until the last surgery that they each expressed how sick I was, how far I had come and how great I looked. I have one more surgery to go and I know they will take as great of care of me as they did then.
After a short 48 hour stint at a neighboring hospital that insurance forced upon us, I was grateful to be returned to TRMC. Our experience at that interim hospital was not good and we are all in agreement that I would either be even more seriously sick or dead had we stayed there. We don't want to re-hash that time. When we returned to TRMC, I was being readmitted by the nurse when she needed to call my surgeon for orders. She returned to my new room and said, "Dr. Harkins wants to move you to another room just around the corner." My first thought was that it was higher level for telemetry or closer to nurses station...something pertaining to the increased level of care I needed. When they rolled me into my new room, our jaws dropped. I liked to refer to it as the George and Laura suite. We had a living room and a kitchen in addition to extra square footage and the regular hospital room. My surgeon came to visit and said that I deserved it for what I was going through and this way my kids could come up and comfortably spend time with me. Who does that for a patient? The extra mile...amazing. I was in tears.
Of course....ask anyone. I was in tears every day.
The wound care doctor was at Tomball Regional Medical Center. My original surgery was in Houston. I had returned twice to my original surgeon expressing concern over my wound and he was nothing short of apathetic. No plan and no concern was expressed. The wound care doc in Tomball took one look and admitted me to the hospital.
After I was admitted to Tomball by the wound care doctor, I was coincidentally discussing the plan with the Tomball surgeon at the exact same time Babe was talking to the original surgeon in Houston. In the two hours I was allowed to get a bag, my mind was racing as to what we were supposed to do. This was a HUGE decision.
1-Do we return to the original apathetic surgeon in Houston? This is a long drive for my family. He got me where I am. His communication is terrible. He released me from the hospital with temperature spikes and high white blood cell count with no concern. BUT....Houston is the MECCA for health care.
2-Do we stay in Tomball? The surgeon was extremely thorough, had a plan, excellent communicator. And you better believe I asked every nurse, aide, and tech what they thought about him and not one person said anything but praiseworthy things about this surgeon. One doctor even said, "He's the trifecta. He is wise, skilled and has good bedside manner to boot." My kids and family are close. But this is Tomball, Texas? Population: small!
I called Babe immediately. He told the Houston surgeon that I was covered up in infection and my wound wasn't healing. He said the Houston doctor said, "I guess you should just transfer her down here." And that was it. I told Babe that I had prayed so hard in those two hours and I had an overwhelming peace about staying in Tomball after talking to my doctors. BUT....I wanted it to be a decision we made together. I needed confirmation of my peace. Babe was in total agreement.
Our decision to stay in Tomball was confirmed over and over again. Praise the LORD for that overwhelming peace I had about staying in Tomball. My surgeon was exactly what I had been told: The Trifecta. He had a nurse practitioner that worked very closely with him in surgeries and patient care. Their time with us was never rushed. Between me and my family members we had hundreds of questions and they just took a seat. Their confidence and communication was exceptional. We had to talk thru a lot of surgeries, difficult choices and potential issues. Their time was ours. We felt the same about my assigned Infection Disease doc, as well as my Gastroenterologist.
I had many different nurses on three different floors and every single one of them was amazing. Not only were they compassionate, but skilled. Two nurses that I remember specifically caught some very potentially dangerous issues....one that sent me to surgery for the 4th time just as they were considering releasing me. Praise GOD she caught the leak I had thru my drain. I had so many antibiotics going that I had two IV poles. I was a difficult patient simply for all the meds that I needed every shift. For the most part, I had a nurse in my room all the time for all the work they had to do for me. I can count at least 5 nurses that either prayed with me or told me they were praying for me. This was not a Christian hospital. They were just amazing on their own.
Even the anesthesiologists were wonderful. Having gone to surgery a total of four times at TRMC, I became a "regular" in the operating room. By the second surgery, they all greeted me and waited on me hand and foot. I don't think I was an exception. I think they just took that great of care of their patients. For my last surgery, that was simply a closing of my incision (it was open and with a wound vac the entire time I was in the hospital) and pulling of a drain, they all high-fived me that I was on my way to healing. Of course, it wasn't until the last surgery that they each expressed how sick I was, how far I had come and how great I looked. I have one more surgery to go and I know they will take as great of care of me as they did then.
After a short 48 hour stint at a neighboring hospital that insurance forced upon us, I was grateful to be returned to TRMC. Our experience at that interim hospital was not good and we are all in agreement that I would either be even more seriously sick or dead had we stayed there. We don't want to re-hash that time. When we returned to TRMC, I was being readmitted by the nurse when she needed to call my surgeon for orders. She returned to my new room and said, "Dr. Harkins wants to move you to another room just around the corner." My first thought was that it was higher level for telemetry or closer to nurses station...something pertaining to the increased level of care I needed. When they rolled me into my new room, our jaws dropped. I liked to refer to it as the George and Laura suite. We had a living room and a kitchen in addition to extra square footage and the regular hospital room. My surgeon came to visit and said that I deserved it for what I was going through and this way my kids could come up and comfortably spend time with me. Who does that for a patient? The extra mile...amazing. I was in tears.
Of course....ask anyone. I was in tears every day.
God Moments: Climbing Back on the Horse
I am reposting a series of posts, "God Moments" from my family blog. I had surgery in May to remove 80% of my stomach secondary to my Crohn's Disease. We thought it successful, but my incision wasn't healing. And so the story begins...
I don't even know where to begin with this post. Words really can't describe all the emotions that have occurred since June 15th. My incision wasn't healing from my surgery, so my Home Health nurse sent me to a Wound Care Specialist for a wound vac. When the specialist saw my incision and the drainage in it, she told me to go home and pack a bag and come back in 2 hours. She admitted me to the hospital for a surgery and infectious disease consult. I am not sure at what point I understood the gravity of my situation, but it certainly wasn't then. After two days in the hospital with multiple tests, the doctors were in awe that I was upright. I was severely septic. And so began 5 weeks in the hospital and 4 surgeries to remove infection and repair the damage from my first surgery.
My hospital stay was long with some pretty dark and painful days. I was highly emotional, as you can imagine, being away from my boys and being in the hospital for so long. My mom told me multiple times that she prayed for me to forget my time in the hospital and I think her prayers were heard. There is a lot I don't remember and probably some I have blocked out. Much of it is too raw and frankly, I don't want to re-hash. What I do want to remember and share are the God moments. The moments when the ONLY answer was that God had me in His hands. The amazing signs that we saw. The unbelievably enormous group of prayer warriors I had praying for me. I still tear up when someone tells me they were praying for me. Being as sick as I was and so desperate to be well, prayer was and still is the best gift I could receive. Prayer was my only hope. To hear that someone took the time to pray for my healing is overwhelming for me. Friends, family and even perfect strangers have told us their church, Bible Study, friends, were praying for me. I believe in prayer and I know that I am where I am because of the power of so many praying for me.
I am home now for almost 4 weeks. By all reports, I am healing very well. My incision is almost closed save one pinhole at the top. (Still praying that that is a non-event). I am getting stronger, my appetite is growing and I have gained 5 pounds after losing almost 40. I still have a way to go, but my strength comes from my Father in Heaven and no medication tops being at home with my family.
As I am able, I will share the good moments, the GOD moments....the moments where all the glory should be to God for saving me, healing me and enabling me to return to a healthy and fit mom and wife.
That is where my eyes are. Good health is an incredible gift and its free. If you have it, don't take it for granted. Now, I must work for it and I will not stop until I get it!
I don't even know where to begin with this post. Words really can't describe all the emotions that have occurred since June 15th. My incision wasn't healing from my surgery, so my Home Health nurse sent me to a Wound Care Specialist for a wound vac. When the specialist saw my incision and the drainage in it, she told me to go home and pack a bag and come back in 2 hours. She admitted me to the hospital for a surgery and infectious disease consult. I am not sure at what point I understood the gravity of my situation, but it certainly wasn't then. After two days in the hospital with multiple tests, the doctors were in awe that I was upright. I was severely septic. And so began 5 weeks in the hospital and 4 surgeries to remove infection and repair the damage from my first surgery.
My hospital stay was long with some pretty dark and painful days. I was highly emotional, as you can imagine, being away from my boys and being in the hospital for so long. My mom told me multiple times that she prayed for me to forget my time in the hospital and I think her prayers were heard. There is a lot I don't remember and probably some I have blocked out. Much of it is too raw and frankly, I don't want to re-hash. What I do want to remember and share are the God moments. The moments when the ONLY answer was that God had me in His hands. The amazing signs that we saw. The unbelievably enormous group of prayer warriors I had praying for me. I still tear up when someone tells me they were praying for me. Being as sick as I was and so desperate to be well, prayer was and still is the best gift I could receive. Prayer was my only hope. To hear that someone took the time to pray for my healing is overwhelming for me. Friends, family and even perfect strangers have told us their church, Bible Study, friends, were praying for me. I believe in prayer and I know that I am where I am because of the power of so many praying for me.
I am home now for almost 4 weeks. By all reports, I am healing very well. My incision is almost closed save one pinhole at the top. (Still praying that that is a non-event). I am getting stronger, my appetite is growing and I have gained 5 pounds after losing almost 40. I still have a way to go, but my strength comes from my Father in Heaven and no medication tops being at home with my family.
As I am able, I will share the good moments, the GOD moments....the moments where all the glory should be to God for saving me, healing me and enabling me to return to a healthy and fit mom and wife.
That is where my eyes are. Good health is an incredible gift and its free. If you have it, don't take it for granted. Now, I must work for it and I will not stop until I get it!
Saturday, April 25, 2015
...And Finally....
Hey sweet friends. I have not been very organized about who I am emailing, as its rather off the cuff. I know I will miss someone and just please apologize to that person for me :) I have included my first 2 emails below.
I will be having surgery next Monday May 4th. The original issue that required waiting ended up being a non-issue, wonderful news. I am currently on liquids only, so the sooner the better!
They believe that what is going on is not necessarily my Crohns, which is also a huge praise. For those who want to know, my past surgeries re-routed my stomach and gave me a new exit in my stomach. That exit, of course, doesn’t have a “flap” so the acids in my intestines reflux back into my stomach and have essentially eroded my stomach. When I say ulcers, the pictures aren’t pretty. They are like 24+ ulcers that have merged together and perforated in multiple locations….the reasons I have had to have blood transfusions, the reasons I can’t eat, the reasons for so much pain, nausea, vomiting. So when I tell you that they are going to remove a portion of my stomach, that is music to my ears! :) TAKE IT!! They are going to remove all the ulcerated/diseased areas, repair what they can and reconnect me. These doctors are so confident that I will be a new person on the other side of this surgery, so I will share their confidence and excitement. {sorta}
My new GI said this surgeon is the only surgeon in Houston he would let touch my stomach. {in his Turkish accent} “Only doctor I let touch my sister. If I had sister…” ;) I will be in Methodist Hospital for about a week and home to recover for 6 weeks. We are SO grateful for our army. We have family lining up schedules to come help with the boys and the patient :) We have amazing friends who have already offered to help us at home and with my business. We are so blessed and so grateful. I cannot wait for a few months down the line to report to you how wonderful I feel!
Thank you for your continued prayers. I get messages all the time from friends of friends and some strangers that are praying for me. People get my name of prayer lists. That makes me cry all the time…tears of joy. But, WOW! Strangers who take the time to pray for me and for my family. It’s a lot to put my overly-emotional head around. We are so completely humbled by all of it. There is nothing more overwhelming and appreciated all at the same time! Please keep my boys in your prayers. They know they want me to feel better, but they are already nervous about me leaving for a week to go to the hospital. Oh, how that makes me so sad. God please cover and protect my family in my absence! ;) XOXO
Thursday, April 9, 2015
...And Again....
After last weeks scope, I had to go back in yesterday for another since they couldn't see much of my stomach for all the food that was retained there. Here is my note to my friends yesterday with the update:
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. II Corinthians 12:9-10
Hey hey! Here I am! :) Again…so sweet are the texts and messages. I know it seems so silly, but each one seriously lifted my spirits today. Today, I had John with me. I was working harder to keep him sane than he was me. As I told the nurse after his 20th question in 5 minutes….”This is why I brought my Mom last time! :)” He had his notebook and pen and did a good job of taking notes for us. We are a team!
So….phew. Where to start.1-The ulcers they found in my stomach are pretty ugly and deep….one they believe to be perforated or perforating. That isn’t news to me. What he originally thought was that those were NOT Crohns ulcers, but they are. From the biopsies of the ulcers, they found that I have CMV…cytomegalovirus. This is a common virus that is all over the place, but not everyone gets it except for those lucky enough to have an immune compromised body like me.2-Because of my surgeries, I have two exits to my stomach. Both are ulcerated and both are obstructed by inflammation. Surgery is imminent. :(3-However…before I can have surgery, I absolutely HAVE to get rid of the CMV and he really wants the ulcers to be healed or healing. I can respect that as he wants my body in the best possible shape for surgery. He does feel that the increased pain and issues I have had since the Fall are related to the CMV and is hopeful that I will have a great deal of relief when we treat it.4-Plan: See an infectious disease doctor to get the CMV taken care of. Manage the ulcers with a new medication and get my body ready for surgery.5-If I can handle it, I am hoping to be healed and strong by the end of the summer for surgery.Spiritual matters. There is no way to separate my faith from my experiences here. As you know, we have been so moved to tears, joy, peace, laughter, and more tears over my failing body. It has certainly been an emotional roller coaster for both of us over the years. I have been to 5 GI doctors alone in my years of illness and there has been one consistent message we have received from every single one. My first doctor in Tulsa called me an NCS. The name he gives his patients that are “Non-Complaining Souls.” The doctor at Mayo Clinic told me if I was on the Oregon Trail, he would put his money on me making it to Oregon. When I didn’t understand he said that most people in my “condition” are in a wheelchair. Today, my doctor looked at John and told him in his Turkish accent, “She is STRONG woman! Most of my patients that look like her are completely debilitated. She has strong will.” (as if he didn’t already know my strong will ;))I say this not to give myself kudos..at all. Because I don’t feel strong at all. In fact, I feel pretty broken internally most days. I say this to tell you and all the friends of friends and perfect strangers from all the prayer lists in my hometown and here that you have put me on, that those prayers are COMPLETELY sustaining me. I am not tough. I am not strong. Sure there are days that are harder than others, but I get to be a mom to 3 hooligans and I get to play tennis twice a week, I run my own business. I GET to live a pretty amazing life free of a wheelchair and not from a bed. (I cannot fathom!!) There is no way I have the power and the strength to do that on my own. There is absolutely no way I could will myself to be OK despite my internal health. The ONLY possible answer is that your prayers are heard and being heard and please don’t stop! We are So.Grateful. I am SO.Grateful. for this life I have.My surgery is going to be really complicated. It’s not going to be easy for any of us. I am officially scared. But I KNOW without a doubt that I am fully covered in prayer, thanks to you, and I could not ask for anything more.As I left the doctor he said, “This is complicated. You are complicated. But don’t you worry because we “do" complicated here. We can fix complicated. It is just going to take time.” Praise. The. Lord.
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. II Corinthians 12:9-10
Here We Go Again
I have gotten progressively worse since I had the pneumonia in the Fall and have finally been referred to a new GI doctor in Houston. This is the note to my sweet praying friends after my first scope with him last week.
Hi friends! I am alive! :) Thank you, Thank you for all the sweet texts, phone calls, messages…all of it. I got every one of them and loved all of them. It was a crazy day, but I know a few of you like the medical details. I am still piecing together things I heard while still coming out of sedation and what my mom has told me. There was bittersweet information we gained yesterday, but first and foremost several praises.
Hi friends! I am alive! :) Thank you, Thank you for all the sweet texts, phone calls, messages…all of it. I got every one of them and loved all of them. It was a crazy day, but I know a few of you like the medical details. I am still piecing together things I heard while still coming out of sedation and what my mom has told me. There was bittersweet information we gained yesterday, but first and foremost several praises.
1- I am certain my angel (Kara!!) was with me in the room. When I got back, I only mentioned under my breath that I might be an aspiration risk. They all stopped everything they were doing and brought in my doctor. We discussed for a few minutes that I had food all the way to my esophagus. Then, they noticed I was sitting up (laying flat is brutal for me). When the anesthesiologist asked if I had back pain, I said no that it was uncomfortable because I might vomit. He said….”Intubate!” After the procedure they said more than a few times how grateful they were that I warned them. By being intubated, it protected my lungs from aspirating that food. I did throw up while sedated and it would have been a disaster with so many more complications had I not been intubated and thrown up. Praise!
2-Once in, they spent the majority of the 3 hours cleaning out my tummy. They removed 1.2 liters of food and more when they extubated me. And I hadn’t eaten in a day! They did determine that my strictures are not the issue as we thought. Which, in my mind, is SO wonderful to know that its possible that it is NOT my Crohns that is acting up. HUGE! to know/hope that my Crohns is not progressing. PRAISE!
3-The issue, they think, is an emptying issue that is secondary to my surgeries 15 years ago. They aren’t exactly sure, thus my going BACK in for another procedure on Wednesday. It is possible that after stomach surgery (even numbers of years later) that the stomach will just stop pushing the food thru. In my previous surgeries, they cut my Vagus Nerve intentionally because it is responsible for secreting acid. BUT…it is also responsible for peristalsis….or pushing food thru the stomach. Doctor friends….you probably know those terms better than me!
Waiting on test results, biopsies, lab results.
John and I are both so humbled, grateful, and overwhelmed with the love of our friends. We are tired…very tired of fighting for health and normalcy. We know that it seems endless and feel like we are wearing our precious friends out with our prayers and struggles. It takes having absolutely nothing left in our human strength to know the power of our God, to know the power of prayer and to know the incredible God-given beauty of true friendships. The kind of friends who love you thru the difficult times and amazingly, just keep loving you when the struggles don’t stop. We love each of you so much and appreciate every. single. word, prayer, note, and thought. To be prayed for and to FEEL that prayer, to FEEL the Holy Spirit take over….that is a feeling I wish everyone can experience and a feeling I can’t possibly put into words. It has been a struggle for me, but I have not experienced any pain as great as the POWER of fullness, joy, peace…(i truly can’t describe what I feel) when I know prayers are coming to me in a specific moment. We have learned and grown so much thru this “nightmare” in our marriage and in our faith. God is good. ALL the time! He turns lemons into lemonade!
John, who many of you know worries at an OCD level of worry, was in tears yesterday on our way to the hospital. He said, “I don’t want people to have to help us. I just want to be able to help other people the way everyone is helping us.” We are eternally grateful and love each of you so so so much.
xoxo
Monday, December 22, 2014
State of the Body Address
When I go on hiatuses in my blog, its typically because of my health. This time is no different. I have copied this from my family blog. It's the details that everyone asks about, it's where my head is and its a lot of my heart. I am so grateful for every person in my life that has ever said a word to me...a word of encouragement, an "I'm praying for you", given me a hug. I am so blessed by so many people who play a part in my life. Alone is not an option for me. I have lots of "Together's" and I am so grateful to have so many people to be "together" with.
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.
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.
Tuesday, August 26, 2014
Valor Oil Benefits Plus One More!
Seeing as how this week is the first week of school for us, Valor is a good pick for the Oil of the Week. This one might get a little long, as it has drastically impacted my family recently. Here it goes:
The ADD Center here is really amazing and highly reputable. They understand my desire to not start meds for him since he still made all A’s…we don’t need the “Hail Mary” yet. I didn’t elaborate with them on the essential oils, but did tell them we wanted to start naturally knowing how many friends I have with kids who HATE the way the ADD meds make them feel. Their suggestion was to take their non-prescription Fish Oil. Fish Oil is really great for ADD/ADHD and they have found a way to make it cross the blood-brain barrier by including a special chemical found in breast milk. Without that, it can’t cross the blood brain barrier where it needs to be. The funny thing is….Essential Oils cross the blood-brain barrier, too! And….they aren’t synthetically made to imitate something they are not. Young Living makes a wonderful fish oil product called Omegize and it has essential oils in there that allow the fish oil to cross the blood brain barrier. That said, not only do we rub valor on the base of my son’s skull every morning, he also takes his Omegize daily.
I never knew the value that Valor would have in so many households. Our story really surprised me….a lot. My oldest son (starting 4th) is a straight A kid. I noticed in 2nd grade that his benchmark exams in reading were dropping, dropping and dropping. He was barely squeaking by at grade level. In first grade he was the top reader in the class! I spoke with his teachers, who seemed to think he had nothing to worry about. By the second semester of his 3rd grade year, his grades in reading were all over the place: 100, 40, 110, 50, 90, 70….seriously erratic. On a hunch that he might have a special kind of ADHD, I put Valor Oil on a paper towel and put it in his backpack. It was STAR testing week. I told him to sniff it if he felt like he needed help focusing. He said he did use it when it came to the reading part and he said it worked. That was all I got from him. And we waited….
On the last day of school, we received his STAR results. My jaw dropped. While I thought I had the wrong child’s report, he meekly said, “It’s terrible, isn’t it mom?” His confidence was so rocked from the issues he was having. Not only was it awesome, he scored in the 99th %ile on Reading Comprehension!! For the two previous years, his math and science were excellent (because he loves those classes), but reading was barely passing. He scored HIGHER than his already high math and science scores. I heard “he is fine!” and “most kids who do so well in math and science, often struggle in reading and writing”…..no one ever saw the signs b.c he doesn’t have behavior issues. Most people think that ADHD comes with disruptions in class. His “Hyper” is clicking a pen or bouncing his knee….lucky for me:) We have since been evaluated formally and he does have a peculiar type of ADHD that affects his executive functioning which entails his reading comprehension.
The ADD Center here is really amazing and highly reputable. They understand my desire to not start meds for him since he still made all A’s…we don’t need the “Hail Mary” yet. I didn’t elaborate with them on the essential oils, but did tell them we wanted to start naturally knowing how many friends I have with kids who HATE the way the ADD meds make them feel. Their suggestion was to take their non-prescription Fish Oil. Fish Oil is really great for ADD/ADHD and they have found a way to make it cross the blood-brain barrier by including a special chemical found in breast milk. Without that, it can’t cross the blood brain barrier where it needs to be. The funny thing is….Essential Oils cross the blood-brain barrier, too! And….they aren’t synthetically made to imitate something they are not. Young Living makes a wonderful fish oil product called Omegize and it has essential oils in there that allow the fish oil to cross the blood brain barrier. That said, not only do we rub valor on the base of my son’s skull every morning, he also takes his Omegize daily.
The confidence he is gaining already is priceless. As for his smarts…they are testing his IQ b.c. they feel that he is actually gifted based on his ability to compensate thus far and regurgitate everything he hears verbatim. Of course I love my baby and will brag on him all day. But the point is this. What a tragedy it would be for a child as smart as he is to get so discouraged, he wouldn’t read, or pay attention in school or think he isn’t smart…who knows what paths that lack of confidence would take. He immediately thought he wasn’t “smart” when in essence he is quite smart….he just has a hard time focusing on long reading passages. I have tears thinking about what could have been. But now tears of JOY knowing I can help him without harmful meds….no meds at all. Just a few good fish and plants:)
The funny thing is as we discuss his issues, I am diagnosing my husband as well. My husband never knew he had an issue growing up, but HE felt he had a hard time with reading comprehension….even still. (Ironically, HE loves to read!) He does the bouncing knee at 90 to nothing all the time…the clicking of the pens…the constant movement, albeit smaller movements. So now, we treat them both. This could bring on an amazing peace in my life I never knew existed:)
SO….the benefits of Valor:
1-Emotional Strength/Confidence
2-Anxiety/Panic Attacks
3-Hyperactivity/Attention
4-Sleep Apnea/snoring
5-Spinal Adjustments (holds a spinal adjustment longer)
6-TMJ
7-Sciatica
The way we have been using Valor is as a roll on. The little roll-on tip comes with your starter kit with a new tall black lid as well. We just popped (with a firm snap) that roll-on on our Valor bottle and roll it on the base of his skull every morning. I also have a paper towel (b.c its thick and easy to disguise as a tissue) with Valor on it in his backpack. That way, if he is feeling distracted in a moment, he can also reach in his backpack and take a sniff. That way, we don’t have to deal with the nurse and make a scene. He just pretends to wipe his nose. Brains in a bottle I say! ;)
I was just thinking how I wanted to slather him in Valor….and saw there is a Valor Bar Soap as well. For sure on my next order!
Please please feel free to pass these emails on to anyone you know might need them. The ADD thing really pulls at my heartstrings as I KNOW there are so many kids out there that struggle. Kids that may think they aren’t smart because they can’t do what everyone else is doing with ease. It is NOT a smarts thing. I fully believe that DIET is a huge part of controlling ADD/ADHD, but I can attest to the power of the essential oils first hand when used in combination with a healthy diet. Confidence is invaluable.
OmegaGize Ingredients:
Fish Oil, Rice Tocotrienols, Clove EO (Syzygium aromaticum), CoQ10 Kaneka™, German Chamomile EO (Matricaria recutita), Spearmint EO (Mentha spicata), Vitamin D (Cholecalciferol), Mixed Carotenoids, Other ingredients: Gelatin (tilapia), Silicon Dioxide, purified water
Wednesday, August 20, 2014
Lemon Oil Benefits
This week's Oil of the Week is Lemon Oil. After getting my first set of oils, I found a daily use in every single one of them. One day I even said to my husband, "I have no idea what to do with lemon apart from putting it in my water." {not knowing any of the benefits} A day later, Lemon Oil came to the rescue! I had a very painful cyst that was getting larger and more painful by the day. When I read up on what to use, Lemon Oil was the winner for any and all cysts, including ganglion cysts, hormonal cysts....cysts. The first night I applied the lemon oil topically *neat*. By the next morning the cyst was still there, but the shooting pains down my leg were gone because the pressure was gone. I applied once more topically and from that point on, I put 2 drops of lemon oil in my water twice a day. By the time I made it to the doctor the next week, my cyst was gone and my doctor...dumbfounded. Lemon Oil was officially in my repertoire!Lemon Oil has several other great purposes as well:
-Disinfects and Kills germs when cleaning
-Put in water to clean fruits and veggies
-Removes Callouses/Bunions
-Anti-tumoral
-Removes Cysts
-Detoxifies Cells (if none other, the best reason to add lemon to your water every day. It is a good, slow detox for your body. There is no one out there that doesn't need to detox their cells...healthy or not. Our bodies are LOADED with toxins from foods, environment, skin care products, medications, etc etc.)
**Always use glass or stainless steel cups when using oils. Essential Oils are so concentrated that they will pull the carcinogens out of plastic and into your water.
**Citrus Oils, including Lemon Oil causes photosensitivity. (Carrot Seed Oil is a natural sunscreen)
Tuesday, August 19, 2014
Lavender Oil
SO…
1-Lavender is a KNOWN anti-histamine. Any time you want to grab for Benadryl, grab Lavender.
2-Lavender is used to soothe and heal the skin, stop the burning from a burn or a skinned knee. It is great for dry skin/dandruff, hives. I just used it on my injection site that usually gets big and itchy….not with Lavender.
3-Sleep issues. Lavender is known to help you sleep. Calming for kids, too at bedtime :)
4- Relaxing bath—Put epsom salt and lavender in your bath for relaxing after a long day.
Lavender can replace the use of Neosporin, Benedryl, Zyrtec, Claritin, Sinus meds, etc. Also: Aleve, Motrin, Tylenol PM, Unisom, and calamine lotion.
Allergy Bomb: 4 drops Peppermint, 4 drops Lemon, 4 drops Lavender. IT WORKS!
Your oil of the week is Lavender! Go forth and conquer! :)
Monday, August 18, 2014
Thieves Oil
Where in the world do you start with Thieves Oil? Thieves is called Thieves b.c during the Black Plaque, there were thieves that would rob from the bodies that literally died on the street from the plaque. They would then go to their homes and rob their houses, too. BUT…they never got sick. It was unheard of. When the thieves were finally caught, King James (as in the Bible) decreased their penalty if they revealed their secret to staying healthy. It turns out they were from a family of apothecaries and knew that the combination of Cinnamon, Clove, Lemon, Rosemary, and Eucalyptus kept them healthy. That was the beginning of the end of the plague. :) And thus, that combination is called Thieves Oil.
I cannot say enough about using Thieves for oral care. Most of you know it healed my poor bleeding gums (secondary to being on Humira) to the total shock and awe of my hygienist. Even further…to my next visit where she said that there was nothing (no Biofilm) on my teeth to actually clean. Thieves is good for people who get canker sores, ulcers, halitosis….anything pertaining to the health of your teeth. On top of that, I have had multiple people tell me my teeth are whiter. I have only been swishing Thieves each night, so it must be Thieves oil too!
I have a friend whose husband had a toe fungus (ick) that his doctor said would not go away until he had a specific foot surgery. His feet are mangled from running, etc. His oil-loving wife put a drop of thieves on his toe every night and within a week, the toenail fell off and it grew back completely healthy. Warts…be gone. Will remove a wart pain free. Will also remove a splinter without tweezing it.
My very favorite thing from YL is the Thieves Essential Rewards Kit. It comes with Thieves Soap, Theives Hand Gel, Thieves Housecleaner, Thieves Mouthwash, Thieves Toothpaste and a bottle of Thieves. I never thought I would be cleaning my house with it all, but I do. Instead of my kids eating the remnants of 409 on my counters they are now ingesting natural oils. My house smells awesome when I clean the counters AND it works better than bleach (i have a study to prove it). We put Thieves Cleaner in our washing machine to get rid of the musty smell, we clean our jets in our bathtub by putting Thieves cleaner in the tub and running it…NO MORE bleach! And my hubs was obsessed with bleach. I couldn’t stand that strong odor all the time. My little germ-hating cynic has become a Thieves believer!
You can put this on you, by applying to your feet “neat” or rubbing with a carrier oil on your chest. I like to get the oils inside of me, so i prefer to ingest either by swallowing with water or putting in our pills. I also add Thieves to the diffuser to disinfect or add to the prevention of illness if some one is showing signs in our house. Just get it on or in you! :) It’s amazing!
You can conquer a WHOLE lot with Thieves on your side!
Sunday, August 17, 2014
Frankincense Oil
Frankincense was good enough for Jesus so it has to be good, right!?
Frankincense ranks up there as one of my favorites in the starter kit. As a reminder, the Premium Starter Kit is basically a replacement for your medicine cabinet. You can use each of these oils to handle your basic household needs for meds. It’s remarkable!
1-First and foremost, I use Frankincense as an anti-inflammatory. Truth be told, I had a deep cyst-type something on my chin and I messed with it. So, it was puffy. I put a dot of Frankincense on it “neat” and the next morning the inflammation was completely gone. There was a mark, but zero puffiness. You can take this internally for inflammation, as well. It will take inflammation out of most anything...blemish, bug bite, etc.
2-It will remove brown spots. Basically this is the “bleach” of the oils world. It is common in the YL skin care products to keep the brown spots at bay. (Bosweila Wrinkle Cream ROCKS!)
3-Frankincense is anti-carcinogenic. It literally KILLS cancer cells. This is known in the MD world, too. Google it. There is a doctor at OU, in fact, that is studying it in the use of cancer treatment. A friend had a cancerous mole that she was going to have removed. In the meantime, she put Frank on her mole. By the time she got to the doctor appt there were no more cancer cells. Amazing! That said….there are two kinds of Frankincense. Sacred Frankincense is the other kind that is a little more expensive and is said to treat all the same things, but with more intensity. If I was facing cancer or have been thru at and want to prevent reoccurrence, I would definitely get the Sacred Frankincense. For me, being at risk for lymphoma with my meds, I put Frankincense in my pills and take it prophylactically.
4-Frankincense removes Warts. I haven’t done this, but I hear and read over and again. Apply Frankincense to a wart and it will turn black in a couple weeks and fall off with no pain. Worth the shot! (of note, have heard to use Oregano for planters warts)
5- All things skin. I go to Frankincense for all things skin. I have scars, scabs, scratches…Frankincense heals them. Also really great for stretch marks.
6-Immune System Booster.
Brown Spots, Scars, Immune System Booster, Inflammation….apparently the Wise Men were wise enough to know what Mary needed!
You can take Frankincense in a pill, you can rub it on “neat” (no carrier oils) or you can rub on with carrier oils. I often make a concoction of coconut oil (cold-pressed) with Frankincense and Lavender oils. I use it as lotion, i rub it on injuries and scars. Coconut oil is anti-fungal, and soothes the skin. Frankincense heals and prevents and Lavender soothes. Always remember that oils MUST go in glass or stainless steel. The oils are so concentrated that they will pull the carcinogens out of the plastic and into your water or mixture.
Enjoy!
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