I am in the biggest storm of my life right now and yes, I am filled with fear, anxiety, frustration, anger, sadness, pain, and I'm extremely overwhelmed! However, I Trust In Jesus and because of that I am also filled with joy, love, thankfulness, gratefulness, and even peace...
This two year journey that I've been on has been a rollercoaster of emotions. Two years ago I began seeking some guidance from my gynecologist. I had been having many abnormal hormonal symptoms. He diagnosed me with PCOS, polycystic ovarian syndrome, and referred me to an endocrinologist. I was elated to know that I was going to get some answers for my chronic fatigue, increase of weight, and various other symptoms. I did several labs and the endocrinologist told me that everything was normal. Bottom line...loose weight and loose stress and you will be just fine. This diagnosis did a number on me. I began to think that I was lazy and crazy!!! As the following year continued, I began to get worse. I was beginning to really fall apart. I was working full-time, raising three boys that were all in different activities, and we were in the midst of putting my mother in-law in a nursing home. Last March was, at that time, the biggest storm in our lives. I made Bryce quit Tae Kwon Do, the first activity that really made him feel proud, and made Braydon quit the swim team, which he had just qualified for the state swim meet. It was difficult to admit to my family that I just couldn't hang on any longer. At this time is when my husband began cooking our dinners EVERY night, doing ALL of our laundry, keeping our house picked up daily, completing homework with my boys EVERY night, and putting the kids to bed because I would sleep from the moment I got home from school until about 8pm. I would very easily then go back to bed around 9:30 or 10pm each night.
I was getting an enormous amount of sleep every day, yet I was completely unfunctionable. This is when I realized that I could not work full time anymore...during this realization, I was approached about working part time at my church in Children's Ministry. God is so Good!!! We didn't feel that I could go completely part time financially but when this position arose...we knew it was an answer to prayer. I didn't talk much about my sleeping issues with anyone during this time because the doc told me that I was fine...I just thought I was crazy! I then applied to go part time for the following school year, knowing that I would be working in Children's Ministry at Sonrise for 10 hours a week with most of those hours working from home.
The plan that I had put in place for the fall season had taken a little detour. Due to some transitions at our church, I was asked to take on more hours and responsibilities in our family ministries. I had went from 10 hours to 30 hours a week and was no longer working from home. I was honored and excited about this adventure into ministry! I had the best of both worlds...teaching little minds every morning and little hearts every Sunday! However, my body began shutting down again. I had my next yearly appointment with my gynecologist this past November. I broke down and told the doctor how incredibly tired I was and nonfunctionable. She told me that I had too much on my plate once again and that I needed to slow down.
At this time, I began an intense journey of faith. I met with my principal and pastor to go over what my options were...knowing that I had to give one of these positions up. I took a weekend to really LISTEN to the Lord and studied his word during a weekend retreat at Camp Lutherhaven. I left this retreat feeling that God was telling me to walk away and follow him...take the ministry path...He would fulfill our family needs. I met with my amazing pastor for countless hours...searching and seeking God's will for my calling...is it teaching kindergarten or is it ministry. I shed many tears...this journey not only stretched my faith muscles but stretched my marriage in every direction! My husband was not supporting my desire to be in ministry...he really felt that God had created me to be a teacher. After an amazing sermon toward the end of November, my decision had been made. I was truly convicted that the timing was not right...I needed to walk away from ministry. That very weekend, Jeff had made the decision to support whatever I chose...but the sermon spoke to my soul and the timing just wasn't right. That evening I met with my pastor and resigned my position. This was SUCH a difficult decision!!!
As of January 2011, I was back to working part-time but not having the financial supplement from church that I had been receiving. We weren't prepared for this but knew that it was needed for our family. Since January, my health continued to get even worse. I knew that it was time to focus on my health again. I began waking up in the middle of the night with tingling and numbness in my arms. I thought that I was sleeping wrong, causing my blood to not flow correctly. I began to wake up more frequently and my arms would be straight, making me realize that it was not from a lack of blood flow. Then, the numbness and tingling began in my hands throughout the day, not just at night. It eventually started hurting my hands so much that I couldn't tie my kindergartners shoes, I couldn't button the buttons on my clothes, and I couldn't pick up heavier objects without dropping them. I thought that I had carpal tunnel...until the numbness and tingling began in my left foot sometime in March.
At this point I began to research some of my systems...numbness/tingling, chronic fatigue(sleeping every afternoon from 1-3:15 and many times from 5-6:30pm, disorganization, brain pockets (having issues with retrieving the correct vocabulary), muscle/joint pain and other smaller symptoms. After much research, I was convinced that I had been on the wrong path for two years. This isn't hormonal...I think that there is something seriously wrong with my body...some type of auto immune disorder. So, I decided to schedule an appointment with my General Practitioner this time. I wanted to make sure that I was giving my GP a full picture of my body so I quit taking one of my medications, an anti-inflammatory, that I had been taking for a year, due to plantar fasciitis. My muscles and joints began to hurt so intensely right before my appointment. My doctor thought that we would be looking at Fibromyalgia or possibly MS. He wouldn't send me to a neurologist until all other things were ruled out first. He sent me off with a list of lab tests to be completed. I laughed when I looked at the labs because all of the tests were hormonal except for 2 of them...really!?!?!?
These labs were the beginning to my medical mystery. I got a phone call a week later stating that my labs were very abnormal and that I needed to see an endocrinologist. Seriously!?!?!?! I've been down this road, I don't need another doctor to tell me to loose weight and stress and I'll be fine. My nurse reassured me that this would not happen and that my issues were bigger than my GP. There was something seriously going on. When I asked about the auto immune, I was told that one of the two was fine and with all of the hormonal results, we needed to focus on endocrinology first. I went to a different endocrinologist in April and she diagnosed me with vitamin deficiencies in Vit D & B. I was also diagnosed with hypothyroidism and she began treating this with medication. My cortisol and insulin levels were so high that the endo wanted to investigate Cushing's Disease which is a pituitary or adrenal tumor. I had done a lot of research and was convinced that I had this...Warning - I was doing WAY too much research. However, working on my computer is the one thing that I can do from my couch! My body hurt so much at this point that if I wasn't sleeping, I couldn't get up because of my muscle/joint and now extreme back pain!
I did several more labs to rule out or diagnose Cushing's. The week that this was being done, I also participated in a health fair at my school that was offering some preventative blood draws. I nearly fell over when I got the results from the health fair. My C-Reactive Protein was way high. A normal range is 0-3 and mine was a 39.45. Yepper, you read that right!!! This combined with the other inflammatory test done earlier in the month, confirmed that I indeed do have something auto immune going on. My body is inflammed...yes, I knew that!!! My endo stated that these results were not in her field and that I needed to see a rheumatologist, these levels indicated Rheumatoid Arthritis, but I needed to get the referral from my GP. I then took my entire file of all the labs that had been done in the past four weeks and dropped them off to my GP on Good Friday and asked the nurse for my doc to look over the materials and I scheduled an appointment for the following Monday.
I went to my appointment alone...thinking that we would be discussing Rheumatoid Arthritis. I knew what tests I was going to ask for...I was ready for this appointment...no surprises for me...I've been researching! Once again, I was shocked with his answer. He sat me down with a soft, caring, sincere, voice and told me that all of my labs aligned with something called Multiple Myeloma. He needed to do this test...he was concerned. Of course, I went home and did research and the information hadn't sunk in yet. Multiple Myeloma...bone cancer...uncurable...6months to 4 year survival rate...beginning symptom - back pain. The next morning my mom calls me and I fell apart...I was truly rattled. My husband had been gone for two weeks due to business and I not only was emotionally strained, but physically I was going downhill. I went back to the doctor on Tuesday and he suggested a small medical leave until we get a handle on my test results, doctor appointments, and diagnoses. That was the beginning of my medical leave.
That very evening, Rylan came into my room with a high fever. He snuggled up with me and I lay there thanking the Lord that I didn't have the added stress of how I was going to get sub plans done for the following morning...I was off of work. On Wednesday, my first day off, I picked up Bryce from school and he was burning up with fever. Again, my thankfulness was high! Bryce had been having bowel problems since spring break but I just assumed that this was a virus since Rylan was sick too. By that evening his temperature reached 105. By Friday, he was doubled over in extreme pain. I took Bryce to the doctor that Friday and he told me that I had one sick little boy. He thought it was appendicitis. As he is telling me that I'm not going home but going straight to the hospital...he also looks at my Multiple Myeloma scan....it was NEGATIVE!!! Praise Jesus! We discussed the severe back pain that was getting worse daily. I was in constant pain and my joints were getting worse too. I had to walk down stairs sideways because of the pain in my knees. He prescribed an anti-inflammatory and told me that this would not fix my problems but would band-aid my symptoms until we get things figured out. My doctor told me that I was not well but we had ruled out the worst of the worst and we would keep digging to figure things out but in the meantime, my focus now had to be on Bryce.
My mom went with us to the hospital and after a very long, emotional day, Bryce did not have appendicitis. However, his labs were abnormal and they wanted to keep him for exploratory tests. I truly believe that God knew this storm ahead...I was not only on a medical leave for myself but also to care for my son.
I immediately called my husband, who had been gone 3 weeks at this point, and he began his 11 hour drive home. The pediatric gastroenterologist ruled out appendicitis, bacterial, and Celiac Disease. We were left with a really nasty virus or Chron's, an auto immune disease. As the doctor is going over results, I'm baffled at the similarities with my abnormal labs and Bryce's. What are the chances that we are dealing with the same thing? Only time will tell at this point! I am certain that this is not viral for Bryce. In the past few days, Bryce has gotten worse again. The mommy instinct in me knows there is something wrong. I take him to get his blood drawn again tomorrow. We then will head to the pediatric GI doctor this Thursday. If there continues to show inflammation, they will schedule an endoscopy.
As for me, I don't know how it happened but the Lord gave me more strength during the first two weeks of my medical leave to care for my son, than I even thought possible. With the absence of my husband, I was leaning on friends, family and all my prayer warriors and of course, my big God. We found victory last week when Bryce returned to school on Monday!!! Not only was Bryce gaining strength but so was I!!! My thyroid medication had begun to kick in and I'm now only needing to take a nap every few days and I only need about an hour. My back/ hands and muscles/joints still hurt but it is much more manageable. I'm beginning to feel somewhat normal!!! I write this with tears in my eyes...with great thanksgiving! My children have lost two years of their mommy to a COUCH!!! I am looking forward to the day when our medical mysteries are solved but until then, each day is getting easier. I was able to celebrate and rejoice with my youngest son last week on his last day of preschool! Something that I haven't done in a long time!!! However, that was more energy than I had attempted in several weeks and I was wiped out. I slept all afternoon just to be able to take my kids to their school carnival that night. The rule was, the big boys had to take turns with Rylan because my back and energy simply couldn't keep up with him. Overall, they picked up the torch with ease and followed through. I believe that the boys had a fabulous evening but by the end of the evening, I was in great pain...realizing that I had done WAY too much for one day but grateful that I was able to
Treasure this Time Together with my children.
My weekend has been spent back on the couch, recouping from Thursday and Friday but it was all worth it! Writing is such good therapy for me, thus why I started this blog during all of the chaos of the past few weeks AND it is something that i can do from the couch...LOL! My children, husband, family, and friends have been an amazing blessing throughout all of this and for that I am truly grateful!
As difficult as it was to get up this morning, I knew that the one place I needed to be today was church. As the worship songs began, I found myself connected to the Lord in a much needed way! Then the sermon began, "Storm Chasers"...how to deal with the storms in our lives. I feel like the disciples in Mark 4:37. I am bailing water to keep afloat. Yes, I admit, I have had moments during the past six weeks where I thought Jesus was sleeping through all of my troubles. I was reminded today that I am not alone in this storm if I trust in Jesus!
I go back to school on Tuesday with mixed emotions. Truly excited to see my kinders!!!...ready for a routine...but scared about the upcoming appointments for Bryce and myself in the next two weeks! Now that my medications have kicked in, I am certain that I can tackle being up and moving each morning, knowing that I have my afternoons to lay down when needed. After this morning, I have peace in my heart, joy in my heart, and trust in my heart! I know that Jesus is with me holding my hand and I trust him.
Dear Jesus, please calm these storms...comfort my son...provide wisdom to our doctors...and be with us always...we NEED you...we TRUST you...we LOVE you...
O LORD God Almighty! Where is there anyone as mighty as you, LORD? Faithfulness is your very character.
You are the one who rules the oceans. When their waves rise in fearful storms, you subdue them.
Psalm 89:8-9
