....I just keep trusting my Lord, and He gives a song. Though the storm clouds darken the sky o'er the heavn'ly trail, I just keep trusting my Lord-He will never fail!"
God sees fit to keep me on my knees, not literally, because I would be in rough shape! But spiritually speaking, of course. Yesterday my boss, Angelena, came home and informed me that she had lost her job. GHS had found a hairdresser who could live on site and have full availability to take care of the residents' hair. Angelena was stunned but thrilled to be home for the summer, and the possibility of reopening her salon later. God gave me MUCH grace to let my face speak joy ( my face talks pretty loud, I'm afraid ), instead of panic. Just this week I received a reply to an application I had sent to a family with triplets. So God allowed me to have something in the works before I even lost this job.
I just sent the resume/references tonight, and I'm praying for grace to trust God with the outcome-good or bad, job or no job, God is still good and he's worthy to be praised.
God has prepared my heart for this through combined Bible study this week. We were in Psalm 136, every verse ends with the promise of God's steadfast love enduring forever. So Ben gave us a sheet to fill in our own "good things" that God has given because of His steadfast love. Some of the things we came up with: "O give thanks to God who gives peace in the midst of my trials, for his steadfast love endures forever, who gives a song to the heavy heart, for his steadfast love endures forever. He provides for my daily needs, for his steadfast love endures forever."
I can see how he prepared me to increase my faith through what he taught me last week. By God's grace alone, I'm not freaking out. By His grace alone, I'm relearning to trust, to depend, to lean, and find joy in my God and his all-wise plan, for my life and John's.
"Near the cross! Oh Lamb of God, bring it's scenes before me; Help me walk from day to day with it's shadows o'er me. In the cross, in the cross be my glory ever, til my raptured soul shall find rest beyond the river."
Friday, May 21, 2010
Monday, May 17, 2010
Faith: substance of things hoped for and the evidence of things not seen.
My heart took quite a rebuke last night...Pastor Conley was in Matthew, where we have been for a couple of months now. the second half of Matthew chapter 9. He described the desperation of Jairus who came to Jesus to ask him to raise his daughter from the dead. He explained what the woman with the issue of blood had dealt with for 12 years, how it had made her ceremonially unclean, and cut her off from her family. Her faith in the power Christ had to heal her made her reason that if she could just touch his coat, she could be healed.
And then the Holy Spirit started poking....." you've had this disease for six years....when have you ever asked Me to heal you? Do you think that I can't? When you were in the hospital, did you ask Me to heal you?"
"Never...Lord, I'm sure you could, if you wanted to....Well, no-I didn't..."
Why not? Why had that thought never occurred to me? Why had I never considered asking the One who made my body to heal it?
I think I've gotten so caught up with striving to trust God's sovereignty, that I just accept what happens and go on with life. Well, why shouldn't I ask God to heal me?? Just because I can't physically touch Christ, does not mean that He's unable to heal me. Maybe I've come to a conclusion-however false-that God doesn't do miracles like that anymore....WRONG! My brother Nathan is walking proof that God stills performs miracles:)
Mark 9:23-24 " Jesus said to him, ' If you can believe, all things are possible to him who believes.' Immediately the father of the child cried out and said with tears, 'Lord, I believe; help my unbelief!' "
I think that's where I find my heart, struggling to believe in the power of a God who has already done so much to prove His might. Knowing my faith should be stronger because of prayer He has answered and needs He has met. It's a harsh reality check, and a large slice of humble pie. I have not arrived. I have much to learn about my God....oh so much! I think the omnipotence of God is a theology recited, not necessarily practiced. I should believe it because I have seen it, so why don't I? Because He's not done teaching me, I'm not done learning, I don't fully comprehend His capabilities. Who am I kidding? Forget fully comprehending-I BARELY comprehend the depths of His power.
The specific passage escapes me, but I am looking forward to the day that His glory will be revealed. I will no longer be looking through a dark glass, the veil will be fully lifted from my understanding AND I SHALL SEE HIM AS HE IS! The thought makes me weep....someday I will understand, and rejoice in who God is. Perfectly; unadulterated worship, undistracted by my pride, or my stomach, or my tired feet, etc. Perfectly.
Eternally; I will enjoy Him forever and ever tire of him. Better than a crazy-awesome roller coaster with no waiting lines, it won't make me sick and the thrill will never leave:) Righteous!
"But until then, my heart will go on singing. Until then, with joy I'll carry on. Until the day my eyes behold that city, until the day God calls me home!"
And then the Holy Spirit started poking....." you've had this disease for six years....when have you ever asked Me to heal you? Do you think that I can't? When you were in the hospital, did you ask Me to heal you?"
"Never...Lord, I'm sure you could, if you wanted to....Well, no-I didn't..."
Why not? Why had that thought never occurred to me? Why had I never considered asking the One who made my body to heal it?
I think I've gotten so caught up with striving to trust God's sovereignty, that I just accept what happens and go on with life. Well, why shouldn't I ask God to heal me?? Just because I can't physically touch Christ, does not mean that He's unable to heal me. Maybe I've come to a conclusion-however false-that God doesn't do miracles like that anymore....WRONG! My brother Nathan is walking proof that God stills performs miracles:)
Mark 9:23-24 " Jesus said to him, ' If you can believe, all things are possible to him who believes.' Immediately the father of the child cried out and said with tears, 'Lord, I believe; help my unbelief!' "
I think that's where I find my heart, struggling to believe in the power of a God who has already done so much to prove His might. Knowing my faith should be stronger because of prayer He has answered and needs He has met. It's a harsh reality check, and a large slice of humble pie. I have not arrived. I have much to learn about my God....oh so much! I think the omnipotence of God is a theology recited, not necessarily practiced. I should believe it because I have seen it, so why don't I? Because He's not done teaching me, I'm not done learning, I don't fully comprehend His capabilities. Who am I kidding? Forget fully comprehending-I BARELY comprehend the depths of His power.
The specific passage escapes me, but I am looking forward to the day that His glory will be revealed. I will no longer be looking through a dark glass, the veil will be fully lifted from my understanding AND I SHALL SEE HIM AS HE IS! The thought makes me weep....someday I will understand, and rejoice in who God is. Perfectly; unadulterated worship, undistracted by my pride, or my stomach, or my tired feet, etc. Perfectly.
Eternally; I will enjoy Him forever and ever tire of him. Better than a crazy-awesome roller coaster with no waiting lines, it won't make me sick and the thrill will never leave:) Righteous!
"But until then, my heart will go on singing. Until then, with joy I'll carry on. Until the day my eyes behold that city, until the day God calls me home!"
Friday, May 14, 2010
My heart is filled with thankfulness...
It's FRIDAY!! Yesterday was so productive compared to today, but I haven't felt as well today-I may have overdone it yesterday....BUT the guest list is done!! Guest lists for showers are done!! people have been contacted, and Theresa Bixby is happy:) I am thankful for people who want to bless me by organizing a shower for me, and I'm thankful that my half of the work is done! Again, the guest list is supposedly the toughest part of planning a wedding. The first couple days we were engaged were pretty awful. My parents were completely unaccustomed to large weddings ad were worried about feeding all the people that John and his family wanted to invite. John was eventually became frustrated with me for trying to please all sides, and I was ready to elope after being engaged for two days!! But God gave so much grace, and my in-laws were so sweet and encouraging, assuring me that about half the people we invited wouldn't even come,but they would most likely send a gift:)
As I think about the help they have been, I am so thankful for them! Mom Pachter has always made me feel so comfortable at family parties, she came and stayed with me in the hospital while John worked with my momma. She is probably one of the sweetest women I know. She is going to be a great mother-in-law. She's kind, thoughtful, helpful(but not intrusive), and has a unique sense of humor. I am always amazed at the things that this family jokes about...
Dad Pachter is a quiet man who can do ever so many things. I'd say he's the jack of all the trades my daddy doesn't do. He is ridiculously patient with Christmas lights, I was impressed to see him helping Mom Pachter with Christmas decorations, organizing linen trunks, etc. Those are things my daddy never had time to do, as he typically worked at least 2 jobs to keep the house warm and food on the table ( Northern living is EXPENSIVE!)
My daddy amazes me with the way he uses the talents God has given him. Daddy has been a General contractor, able to build a house from the foundation up, and everything in between. He has built and assembled automated machines. During the time he was in school for this, he was working a shift and a half on top of it. Travel time was about an hour, meaning he got about 3 hours of sleep every night....for 9 months. Did you know that a piece of paper is 3/1000ths of an inch thick? He can cut a piece of steel to 1/1000th of an inch thick. He's a master welder, a very capable auto mechanic (30+ years experience on buses, motorhomes, family cars and postal vehicles) He's a genius driveway plower, able to plan for an entire winter of falling snow in upstate NY, this takes some thinking. The snow just keeps coming, and eventually, the banks become solid and don't move. So then there is no place to put the new snow. Solution: begin the winter ( in October ) by plowing the driveway wide enough to land a commercial aircraft. By the end of winter (May) there will be just enough room for our van to make it down the driveway. Making the driveway so wide also cuts down on the number of times we kids ( me and my brother Randy )had to shovel before church ( once or twice in 2 hours instead of 5-6 times) My daddy built a small vehicle out of plywood with 2 small axles, 4 wheels and steering capabilities...at the age of 3! I do believe he could figure out anything.
My momma is a tough-as-nails-don't-give-me-any-attitude-jump-when-I-say-jump kind of woman. She taught us colors and pairs by teaching us to fold laundry, probably at 1&1/2 years. She taught me to read at the age of 4, reading from the KJV in Sunday school kind of reading. She taught me to clean a toilet, sweep a floor, make my bed properly, fold clothes correctly and perfectly, how to look for dirt and make it disappear, all before I was 7. She taught me to change a diaper, give a bottle, soothe a teething baby, how to check for a fever, how to potty train and how to discipline according to God's Word. She taught me how to teach, and to train the children I nannied for. She taught me to bake, and how to get a meal prepared and all hot at once ( I definitely need some practice on this one). She taught me to shop carefully, to get the best deals, and that name brands don't matter. She demonstrated how to decorate a home with a very limited budget, and how to use my daddy's money carefully. Cleaning is a consistent part of her daily routine, and my daddy has always appreciated coming home to a clean house.
But the most exciting things I have learned, I have learned from the Holy Spirit that indwells me. I have learned some of my weaknesses, and how to overcome them. I have learned humility ( still learning that one! ), and grace towards others. I have learned that only Christ satisfies me. This is perhaps the most important thing I have learned and understood, apart from the truths of the gospel. As much as I love family, and friends and the ones who care about me, nothing compares to the love of Christ for me. And no one deserves my devotion more than he does.To truly experience the joy and satisfaction that Christ brings leaves me searching the recesses of my mind for words to describe it....unusual for a person who loves words.
So what have I learned from John? I have learned what love is, and how to demonstrate it in a way he understands. I have learned to put his needs above my own-which has been really tough a few times. I have realized what a gift he is, and am starting to see how much he loves me, and I'm in awe. I'm unsure as to why God has given me this man. I know that he is not perfect, I have already seen many of his shortcomings, and will surely learn more as we continue counseling, and as we start life together-but I'm thankful. He loves God, and he loves me.
Sometimes I look around at all the work I've been doing to plan this wedding, and all that has yet to be done, and I think " Holy Crap! I'm actually getting married...for real?? Am I ready for this?" And sometimes I think I'm not, I'm selfish, I'm easily frustrated, I'm prideful-how can I possibly love someone more than myself? How can I possibly serve him, and help him serve others with my sin issues? No,I'm not ready! But then the Holy Spirit calms my heart, and reminds me of the work he has done in me through John. The love he demonstrates to me, and the help he gives me. And the truth is, that God has given me opportunities to be selfless and help John serve others, and to be a humble follower-and has given me the desire to honor Christ, and to honor John! Wow.....As crazy as the whole wedding planning process is, I'm ready. Ready to marry John, ready to start life. Ready to serve him, and serve others with him. Anxious to continue growing more like Christ as we grow together. God is good....He's so very, very good.
As I think about the help they have been, I am so thankful for them! Mom Pachter has always made me feel so comfortable at family parties, she came and stayed with me in the hospital while John worked with my momma. She is probably one of the sweetest women I know. She is going to be a great mother-in-law. She's kind, thoughtful, helpful(but not intrusive), and has a unique sense of humor. I am always amazed at the things that this family jokes about...
Dad Pachter is a quiet man who can do ever so many things. I'd say he's the jack of all the trades my daddy doesn't do. He is ridiculously patient with Christmas lights, I was impressed to see him helping Mom Pachter with Christmas decorations, organizing linen trunks, etc. Those are things my daddy never had time to do, as he typically worked at least 2 jobs to keep the house warm and food on the table ( Northern living is EXPENSIVE!)
My daddy amazes me with the way he uses the talents God has given him. Daddy has been a General contractor, able to build a house from the foundation up, and everything in between. He has built and assembled automated machines. During the time he was in school for this, he was working a shift and a half on top of it. Travel time was about an hour, meaning he got about 3 hours of sleep every night....for 9 months. Did you know that a piece of paper is 3/1000ths of an inch thick? He can cut a piece of steel to 1/1000th of an inch thick. He's a master welder, a very capable auto mechanic (30+ years experience on buses, motorhomes, family cars and postal vehicles) He's a genius driveway plower, able to plan for an entire winter of falling snow in upstate NY, this takes some thinking. The snow just keeps coming, and eventually, the banks become solid and don't move. So then there is no place to put the new snow. Solution: begin the winter ( in October ) by plowing the driveway wide enough to land a commercial aircraft. By the end of winter (May) there will be just enough room for our van to make it down the driveway. Making the driveway so wide also cuts down on the number of times we kids ( me and my brother Randy )had to shovel before church ( once or twice in 2 hours instead of 5-6 times) My daddy built a small vehicle out of plywood with 2 small axles, 4 wheels and steering capabilities...at the age of 3! I do believe he could figure out anything.
My momma is a tough-as-nails-don't-give-me-any-attitude-jump-when-I-say-jump kind of woman. She taught us colors and pairs by teaching us to fold laundry, probably at 1&1/2 years. She taught me to read at the age of 4, reading from the KJV in Sunday school kind of reading. She taught me to clean a toilet, sweep a floor, make my bed properly, fold clothes correctly and perfectly, how to look for dirt and make it disappear, all before I was 7. She taught me to change a diaper, give a bottle, soothe a teething baby, how to check for a fever, how to potty train and how to discipline according to God's Word. She taught me how to teach, and to train the children I nannied for. She taught me to bake, and how to get a meal prepared and all hot at once ( I definitely need some practice on this one). She taught me to shop carefully, to get the best deals, and that name brands don't matter. She demonstrated how to decorate a home with a very limited budget, and how to use my daddy's money carefully. Cleaning is a consistent part of her daily routine, and my daddy has always appreciated coming home to a clean house.
But the most exciting things I have learned, I have learned from the Holy Spirit that indwells me. I have learned some of my weaknesses, and how to overcome them. I have learned humility ( still learning that one! ), and grace towards others. I have learned that only Christ satisfies me. This is perhaps the most important thing I have learned and understood, apart from the truths of the gospel. As much as I love family, and friends and the ones who care about me, nothing compares to the love of Christ for me. And no one deserves my devotion more than he does.To truly experience the joy and satisfaction that Christ brings leaves me searching the recesses of my mind for words to describe it....unusual for a person who loves words.
So what have I learned from John? I have learned what love is, and how to demonstrate it in a way he understands. I have learned to put his needs above my own-which has been really tough a few times. I have realized what a gift he is, and am starting to see how much he loves me, and I'm in awe. I'm unsure as to why God has given me this man. I know that he is not perfect, I have already seen many of his shortcomings, and will surely learn more as we continue counseling, and as we start life together-but I'm thankful. He loves God, and he loves me.
Sometimes I look around at all the work I've been doing to plan this wedding, and all that has yet to be done, and I think " Holy Crap! I'm actually getting married...for real?? Am I ready for this?" And sometimes I think I'm not, I'm selfish, I'm easily frustrated, I'm prideful-how can I possibly love someone more than myself? How can I possibly serve him, and help him serve others with my sin issues? No,I'm not ready! But then the Holy Spirit calms my heart, and reminds me of the work he has done in me through John. The love he demonstrates to me, and the help he gives me. And the truth is, that God has given me opportunities to be selfless and help John serve others, and to be a humble follower-and has given me the desire to honor Christ, and to honor John! Wow.....As crazy as the whole wedding planning process is, I'm ready. Ready to marry John, ready to start life. Ready to serve him, and serve others with him. Anxious to continue growing more like Christ as we grow together. God is good....He's so very, very good.
Wednesday, May 5, 2010
New Experiences/ Medical Update
The last 2 weeks in May were a little hairy, to say the least. Yet God so marvelously provided, I simply can't help sharing how good He is!
April 19th was a Monday, and I was not working that day; late that evening, I was at John's house, and SO cold. My very bones were cold, and I couldn't stop shaking! This type of feeling is quite common during a certain time of the month ( which it was ), so I thought nothing of it. So I took some fever reducer and went home to bed. I woke up a few hours later sweating, so I knew that I had broken the fever.
I felt pretty good on Tuesday, so I went to work. Fortunately, all Tristan wanted to do was sit in the playroom and play cars, and their hunting video game. After work I went to John's to clean for Bible Study, and was worn out very quickly, cleaning took about twice as long as it normally does. Once John got home from work, he made me check my temperature- 102 degrees. So I took more fever reducer and fell asleep in his room during Bible Study. My fever had broken by the time everyone went home, so I left as well and went to bed. I had been texting my boss and let her know that it would not be wise for me to work Wednesday, in case I was coming down with some virus. I woke up late Wednesday morning, and every muscle in my body hurt, and taking just a few steps to the bathroom wore me out, and left me very short of breath. I had no saliva, and couldn't drink enough water. I felt like I had a killer case of the flu, but no other symptoms. No cough, congestion, etc. Typically I have one really bad day, and the next day I feel better, so I wasn't too worried. I was in a cold sweat all day, soaking through my clothes and my sheets, and constantly drinking water.
Thursday I woke up after a fitful night of sleep on the floor ( because I had sweat ed through my clothes and sheets ), feeling much worse. At this point I was a little worried. I couldn't stand long enough to take a shower, I had to sit in the tub, and then had a very hard time getting out. More cold sweats, and aches. about 3 pm I started getting worried. I called my momma a couple of times, but she was working that day and didn't answer her phone, so I left her a message telling her I was going to have John take me to the hospital. John left class early to come get me, and called his brother Jamey on his way home. Jamey and his wife Lucy know a good deal about my medical history, and know a bit more about Scleroderma than John did, so he was asking Jamey how worried he should be, etc. Jamey told him that, as I'm not one to complain about pain, or feeling sick, if I thought I needed to go to the hospital, he needed to take me!
So John came and helped me gather things together to get to GMH, he had to carry my down the stairs to the car....that was little humiliating, but I didn't really have a choice. We met up with Jamey at Church St and followed him to the correct ER entrance. He was able to park and wheel me inside while John parked his car. Lucy met us just in the door, got me registered and right back to a triage bed, in about 5 minutes. Withing probably 10 minutes, I had seen a doctor and was getting IV's and blood work started, and got hooked up to a heart monitor. My heart rate upon entering the hospital was 145 bpm, and my respiratory rate was about 135. So even though I was lying still in the bed, my heart was pumping as though I was running a marathon. I was having a very hard time getting enough oxygen, I felt like I was slowly suffocating. Jamey and Lucy got me hooked up to some oxygen, and that helped some. It was so funny to see Jamey teasing her about putting it on wrong, telling her to move aside and let the nurse work! I had been there maybe an hour when my parents arrived, so it was a crowded triage room! :) Lucy stood back and watched the doctors examine me, and then suggested a CT scan on top of the X-rays they were going to take of my chest. She told me that she thought I had Pericarditis, the swelling of the pericardium, which is the lining around the heart. A short while later, the ER doctor came in and told me the same thing, Lucy was excited at how ingenious she is:)
My CT scan revealed some abnormalities on my lungs, which they later discovered were cysts of scar tissue, formed on my lungs because of Scleroderma, an auto-immune disease I had been diagnosed with at the age of 16. I believe I was in the ER about 4 hours, and then I was taken upstairs to the Cardiac Care Unit. Blood work was done every 4 hours, I had 2 IV's pumping me full of fluids(about 5 liters total), and antibiotics, in case I had some bacterial infection that caused all the hoopla. They gave me 3 different antibiotics; the first one for 2 hours, than another for 2 hours, then another for 2 hours, and the cycle repeated itself. It was an almost sleepless night, as the lab vampires came in every four hours, doctors were in about as often, nurses every hour, and my blood pressure cuff went off every 30 minutes.
Friday morning, the dear little resident came in and informed me that they were insert a Foley catheter to be sure my kidneys were functioning properly, as I had yet to go to the bathroom despite the fluids they were giving me. I told him it was merely because my body needed all those fluids, and I hadn't caught up yet-but to no avail!! My nurse came in to put it in, and I'm convinced there is nothing that I have ever experienced as awful as that! My momma told me later that she had "had a catheter with a couple pregnancies....but she had an epidural"....Yeah, I didn't! About an hour and a half later, the resident, the attending, and another doctor came in to check on me and review on the the many labs done that day. I very sweetly, and very matter-of-factly suggested that, since it was clear that my kidneys were functioning properly, it was well past time to remove the catheter! They agreed that it would be ok, and I told the resident that the other two doctors were now my favorites...he thought I was kidding, but I was completely serious.
Jamey and Lucy stopped in that morning as well, and took a look at the bruises forming on my arms from the frequent labs, and commented on how they should be using pediatric tubes on my, which means that they draw the blood up in a syringe, and take far less blood. So he talked to the doctors about it, and they put a sign on the door for the lab vampires to see. That evening they decided I had stabilized enough to have labs done just once a day-at 4 AM. They do that so that the lab results are ready when the doctors start rounds at 6AM....Ungodly hours if you ask me! One particular draw was awful; the tech decided to go in the same place everyone else had been going in, which had turned in to a giant bruise. I don't know that she could even see the vein. And once a vein has been hit numerous times, scar tissue forms, so it's even more difficult to get the needle INTO the vein. So she dug around a couple times. At this point I was exhausted and so tired of having blood drawn; my arms were sore, and the tape was removing my skin in chunks. John was holding my other hand, and I was determined NOT to let this tech see me cry, so I waited til she finished. And seeing me cry made poor John cry. It was a very frustrating 5 minutes, and I'm thankful for the restraint of the Holy Spirit, because that tech was in danger of a broken nose by my sweet fiance.
They started giving me Ambien at night to help me sleep, so when the lab techs came in, I was barely coherent enough to hand them my arm. I think I was asleep as soon as the initial stick was over. The fluids started to build up in my hands and my feet and they swelled ridiculously. John had brought in 3 of his dress shirts, and my momma brought me comfy pants, so I was able to still be hooked up to the monitors, but I was much more comfortable and more modest:)
Mom Pachter came and stayed with me Friday evening while John and my momma went to work, cleaning the office buildings that John and I had been cleaning. She was very sweet and supportive, especially when the vampires came to get blood. I am very blessed to be getting such a sweet lady as my mother-in-law! She also stayed with me Monday night, and she and Uncle Gary and Aunt Suellyn helped me move down to a regular room.
John stayed with me day and night, he took off work on Friday and Monday, and only went home for about an hour to get showered at night. John is a very heavy sleeper....usually takes me a half hour to get him awake if he falls asleep on my parents couch. But every time I stirred, he was at my side, asking if I was ok, offering me water, making sure I was warm enough. My parents were very thankful to see him taking such good care of me. My daddy told him before we started dating that we were unsure of how scleroderma would affect me, that it could get rough, and asked if he had considered that possibility. So for my parents to be able to see how he responded when things got rough for me was a blessing for them, and it made my momma cry.
Saturday I had just about had it with sponge baths, but there was no shower in my room. So y nurse talked to my doctors and they told me that if I could get my BP above 90, they would let me take a shower. So John watched the clock, and about 1 minute before I started kicking my legs and marching in bed, and we got my BP up to 102:) Simple things like showers were truly a gift from God. Other gifts God blessed me with: friends that came to visit, and to sing with me. Aaron Higgs came up 3 or 4 times, and it's always good to see his smiling face!
One medication they put me on IV for a very short time was Potassium phosphate.....That was more painful than 13 labs done in 48 hours!! It started with a burning ache at the IV site that woke me up from a drug induced sleep. The nurse came in and cut the dosage drip in half, hoping that would help. About 20 minutes later, the burning ache moved up my arm and into my shoulder, and woke me up again. By this time my doctors were starting rounds, so they came in and assured me that it was a pretty typical reaction to that drug and that they could just give me the potassium via K-Phos pills.
Monday afternoon I was sent for an MRI, overall, not a terrible experience, but the contrast dye felt a little funny shooting through my IV.
Monday night I finally moved to a regular room, which was considerably smaller, but I had a my own bathroom and shower! Thank you LORD...That was the last night John stayed with me; after sleeping in a small vinyl covered recliner for 5 nights, he was ready to get into his own bed! Tuesday he went back to work, and Alana Chev came to visit me for a while, My housemate/BFF/sister separated at birth, Alicia came for a bit after Alana had left. My momma was able to bring my brother and sister for a visit as well, since I was out of the CCU. So that day passed fairly quickly. That day I had my two IV's taken out of my left arm, and a clean one put in my right forearm, just in case.
Wednesday morning the first thing I asked the resident at 6AM was if he was carrying my discharge papers. He laughed and promised to work on it. Later that morning the resident came back with the attending and the other doctor-I think his name was Dr. White- to discuss my MRI results. I asked him if he had my discharge papers, he smiled and told me it was very likely that I would be discharged, but he needed to confer with the cardiologist. Lucy came by about 10 Am and as we were talking, the attending, Dr. El-Ibiary, came in. We stopped and just stared for a second, and I asked if he had good news for me, and he told me he had just dropped off my discharge papers. Lucy and I cheered, and he blushed a little...My nurse informed me that realistically, it would probably be close to 2PM before the paperwork was finished and I could actually leave. So I got up and started organizing my belongings, and getting decent to leave. I got my IV taken out, and just sat with my momma and waited. Once we got my stuff on a cart, picked up my meds from the hospital pharmacy, and got to the truck, it was about 2:10. Home by 2:30 PM on Wednesday, April 28th.
6 days in the hospital, 4 days in the CCU, and what did God teach me? That I have much to be thankful for. In the midst of this storm, I don't recall doubting God's sovereignty, I was overwhelmed by the love pured on me by my family, John and his family, friends, and my nurses. Jamey and Lucy made sure I got the best cardiology team and internal physicians, God gave me the sweetest nurses, who took wonderful care of me. He gave me hilarious nursing students to amuse me in the room downstairs. I got to shower twice:D My boss has been so completely understanding; occasionally texting me to see how I'm doing, telling me how much they love and miss me, but assuring me not to hurry back to work before I'm ready.
I have been benefiting from my momma's cooking, and the swelling in my hands is gone, taking with it the pain I had in my hands the last 3 days I was in the hospital, and I can see my ankle bones. I was able to go to church Sunday morning, and fellowship with my church family. Saturday I was talking with my momma, and she was marveling at how well God provides when we need it. When Nathan needed hospital care, he got the best neurosurgeon, the best nurses, etc. And God gave me his best too.
My greatest desire during my hospital stay was to, by God's grace, maintain a joyful, uncomplaining spirit. And the LORD made that very easy, as he continuously showed me how gracious and kind he was being. God is good regardless of my circumstances, and he was much kinder than I deserved during these particular circumstances!
April 19th was a Monday, and I was not working that day; late that evening, I was at John's house, and SO cold. My very bones were cold, and I couldn't stop shaking! This type of feeling is quite common during a certain time of the month ( which it was ), so I thought nothing of it. So I took some fever reducer and went home to bed. I woke up a few hours later sweating, so I knew that I had broken the fever.
I felt pretty good on Tuesday, so I went to work. Fortunately, all Tristan wanted to do was sit in the playroom and play cars, and their hunting video game. After work I went to John's to clean for Bible Study, and was worn out very quickly, cleaning took about twice as long as it normally does. Once John got home from work, he made me check my temperature- 102 degrees. So I took more fever reducer and fell asleep in his room during Bible Study. My fever had broken by the time everyone went home, so I left as well and went to bed. I had been texting my boss and let her know that it would not be wise for me to work Wednesday, in case I was coming down with some virus. I woke up late Wednesday morning, and every muscle in my body hurt, and taking just a few steps to the bathroom wore me out, and left me very short of breath. I had no saliva, and couldn't drink enough water. I felt like I had a killer case of the flu, but no other symptoms. No cough, congestion, etc. Typically I have one really bad day, and the next day I feel better, so I wasn't too worried. I was in a cold sweat all day, soaking through my clothes and my sheets, and constantly drinking water.
Thursday I woke up after a fitful night of sleep on the floor ( because I had sweat ed through my clothes and sheets ), feeling much worse. At this point I was a little worried. I couldn't stand long enough to take a shower, I had to sit in the tub, and then had a very hard time getting out. More cold sweats, and aches. about 3 pm I started getting worried. I called my momma a couple of times, but she was working that day and didn't answer her phone, so I left her a message telling her I was going to have John take me to the hospital. John left class early to come get me, and called his brother Jamey on his way home. Jamey and his wife Lucy know a good deal about my medical history, and know a bit more about Scleroderma than John did, so he was asking Jamey how worried he should be, etc. Jamey told him that, as I'm not one to complain about pain, or feeling sick, if I thought I needed to go to the hospital, he needed to take me!
So John came and helped me gather things together to get to GMH, he had to carry my down the stairs to the car....that was little humiliating, but I didn't really have a choice. We met up with Jamey at Church St and followed him to the correct ER entrance. He was able to park and wheel me inside while John parked his car. Lucy met us just in the door, got me registered and right back to a triage bed, in about 5 minutes. Withing probably 10 minutes, I had seen a doctor and was getting IV's and blood work started, and got hooked up to a heart monitor. My heart rate upon entering the hospital was 145 bpm, and my respiratory rate was about 135. So even though I was lying still in the bed, my heart was pumping as though I was running a marathon. I was having a very hard time getting enough oxygen, I felt like I was slowly suffocating. Jamey and Lucy got me hooked up to some oxygen, and that helped some. It was so funny to see Jamey teasing her about putting it on wrong, telling her to move aside and let the nurse work! I had been there maybe an hour when my parents arrived, so it was a crowded triage room! :) Lucy stood back and watched the doctors examine me, and then suggested a CT scan on top of the X-rays they were going to take of my chest. She told me that she thought I had Pericarditis, the swelling of the pericardium, which is the lining around the heart. A short while later, the ER doctor came in and told me the same thing, Lucy was excited at how ingenious she is:)
My CT scan revealed some abnormalities on my lungs, which they later discovered were cysts of scar tissue, formed on my lungs because of Scleroderma, an auto-immune disease I had been diagnosed with at the age of 16. I believe I was in the ER about 4 hours, and then I was taken upstairs to the Cardiac Care Unit. Blood work was done every 4 hours, I had 2 IV's pumping me full of fluids(about 5 liters total), and antibiotics, in case I had some bacterial infection that caused all the hoopla. They gave me 3 different antibiotics; the first one for 2 hours, than another for 2 hours, then another for 2 hours, and the cycle repeated itself. It was an almost sleepless night, as the lab vampires came in every four hours, doctors were in about as often, nurses every hour, and my blood pressure cuff went off every 30 minutes.
Friday morning, the dear little resident came in and informed me that they were insert a Foley catheter to be sure my kidneys were functioning properly, as I had yet to go to the bathroom despite the fluids they were giving me. I told him it was merely because my body needed all those fluids, and I hadn't caught up yet-but to no avail!! My nurse came in to put it in, and I'm convinced there is nothing that I have ever experienced as awful as that! My momma told me later that she had "had a catheter with a couple pregnancies....but she had an epidural"....Yeah, I didn't! About an hour and a half later, the resident, the attending, and another doctor came in to check on me and review on the the many labs done that day. I very sweetly, and very matter-of-factly suggested that, since it was clear that my kidneys were functioning properly, it was well past time to remove the catheter! They agreed that it would be ok, and I told the resident that the other two doctors were now my favorites...he thought I was kidding, but I was completely serious.
Jamey and Lucy stopped in that morning as well, and took a look at the bruises forming on my arms from the frequent labs, and commented on how they should be using pediatric tubes on my, which means that they draw the blood up in a syringe, and take far less blood. So he talked to the doctors about it, and they put a sign on the door for the lab vampires to see. That evening they decided I had stabilized enough to have labs done just once a day-at 4 AM. They do that so that the lab results are ready when the doctors start rounds at 6AM....Ungodly hours if you ask me! One particular draw was awful; the tech decided to go in the same place everyone else had been going in, which had turned in to a giant bruise. I don't know that she could even see the vein. And once a vein has been hit numerous times, scar tissue forms, so it's even more difficult to get the needle INTO the vein. So she dug around a couple times. At this point I was exhausted and so tired of having blood drawn; my arms were sore, and the tape was removing my skin in chunks. John was holding my other hand, and I was determined NOT to let this tech see me cry, so I waited til she finished. And seeing me cry made poor John cry. It was a very frustrating 5 minutes, and I'm thankful for the restraint of the Holy Spirit, because that tech was in danger of a broken nose by my sweet fiance.
They started giving me Ambien at night to help me sleep, so when the lab techs came in, I was barely coherent enough to hand them my arm. I think I was asleep as soon as the initial stick was over. The fluids started to build up in my hands and my feet and they swelled ridiculously. John had brought in 3 of his dress shirts, and my momma brought me comfy pants, so I was able to still be hooked up to the monitors, but I was much more comfortable and more modest:)
Mom Pachter came and stayed with me Friday evening while John and my momma went to work, cleaning the office buildings that John and I had been cleaning. She was very sweet and supportive, especially when the vampires came to get blood. I am very blessed to be getting such a sweet lady as my mother-in-law! She also stayed with me Monday night, and she and Uncle Gary and Aunt Suellyn helped me move down to a regular room.
John stayed with me day and night, he took off work on Friday and Monday, and only went home for about an hour to get showered at night. John is a very heavy sleeper....usually takes me a half hour to get him awake if he falls asleep on my parents couch. But every time I stirred, he was at my side, asking if I was ok, offering me water, making sure I was warm enough. My parents were very thankful to see him taking such good care of me. My daddy told him before we started dating that we were unsure of how scleroderma would affect me, that it could get rough, and asked if he had considered that possibility. So for my parents to be able to see how he responded when things got rough for me was a blessing for them, and it made my momma cry.
Saturday I had just about had it with sponge baths, but there was no shower in my room. So y nurse talked to my doctors and they told me that if I could get my BP above 90, they would let me take a shower. So John watched the clock, and about 1 minute before I started kicking my legs and marching in bed, and we got my BP up to 102:) Simple things like showers were truly a gift from God. Other gifts God blessed me with: friends that came to visit, and to sing with me. Aaron Higgs came up 3 or 4 times, and it's always good to see his smiling face!
One medication they put me on IV for a very short time was Potassium phosphate.....That was more painful than 13 labs done in 48 hours!! It started with a burning ache at the IV site that woke me up from a drug induced sleep. The nurse came in and cut the dosage drip in half, hoping that would help. About 20 minutes later, the burning ache moved up my arm and into my shoulder, and woke me up again. By this time my doctors were starting rounds, so they came in and assured me that it was a pretty typical reaction to that drug and that they could just give me the potassium via K-Phos pills.
Monday afternoon I was sent for an MRI, overall, not a terrible experience, but the contrast dye felt a little funny shooting through my IV.
Monday night I finally moved to a regular room, which was considerably smaller, but I had a my own bathroom and shower! Thank you LORD...That was the last night John stayed with me; after sleeping in a small vinyl covered recliner for 5 nights, he was ready to get into his own bed! Tuesday he went back to work, and Alana Chev came to visit me for a while, My housemate/BFF/sister separated at birth, Alicia came for a bit after Alana had left. My momma was able to bring my brother and sister for a visit as well, since I was out of the CCU. So that day passed fairly quickly. That day I had my two IV's taken out of my left arm, and a clean one put in my right forearm, just in case.
Wednesday morning the first thing I asked the resident at 6AM was if he was carrying my discharge papers. He laughed and promised to work on it. Later that morning the resident came back with the attending and the other doctor-I think his name was Dr. White- to discuss my MRI results. I asked him if he had my discharge papers, he smiled and told me it was very likely that I would be discharged, but he needed to confer with the cardiologist. Lucy came by about 10 Am and as we were talking, the attending, Dr. El-Ibiary, came in. We stopped and just stared for a second, and I asked if he had good news for me, and he told me he had just dropped off my discharge papers. Lucy and I cheered, and he blushed a little...My nurse informed me that realistically, it would probably be close to 2PM before the paperwork was finished and I could actually leave. So I got up and started organizing my belongings, and getting decent to leave. I got my IV taken out, and just sat with my momma and waited. Once we got my stuff on a cart, picked up my meds from the hospital pharmacy, and got to the truck, it was about 2:10. Home by 2:30 PM on Wednesday, April 28th.
6 days in the hospital, 4 days in the CCU, and what did God teach me? That I have much to be thankful for. In the midst of this storm, I don't recall doubting God's sovereignty, I was overwhelmed by the love pured on me by my family, John and his family, friends, and my nurses. Jamey and Lucy made sure I got the best cardiology team and internal physicians, God gave me the sweetest nurses, who took wonderful care of me. He gave me hilarious nursing students to amuse me in the room downstairs. I got to shower twice:D My boss has been so completely understanding; occasionally texting me to see how I'm doing, telling me how much they love and miss me, but assuring me not to hurry back to work before I'm ready.
I have been benefiting from my momma's cooking, and the swelling in my hands is gone, taking with it the pain I had in my hands the last 3 days I was in the hospital, and I can see my ankle bones. I was able to go to church Sunday morning, and fellowship with my church family. Saturday I was talking with my momma, and she was marveling at how well God provides when we need it. When Nathan needed hospital care, he got the best neurosurgeon, the best nurses, etc. And God gave me his best too.
My greatest desire during my hospital stay was to, by God's grace, maintain a joyful, uncomplaining spirit. And the LORD made that very easy, as he continuously showed me how gracious and kind he was being. God is good regardless of my circumstances, and he was much kinder than I deserved during these particular circumstances!
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