This fall, I was having severe migraines. A friend of mine recommended a physician who specializes in pain and headaches. In December, I was able to see the medical professional. Unfortunately, the physician seemed to be blinded by my muscle tremors and significant muscle weakness and seemed to completely ignore my migraines. The doctor referred me on to see a neurologist.
Today, my appointment with the neurologist finally came to pass. To my shock and amazement, the physician did a very thorough examination and took a very long, detailed medial history. Of course, my medial case was too complex for her; she said she needed to refer me on to the large medial facility 400 miles away. (I was not thrilled with the prospect of having to make another trip to the medical facility, but I pray God will continue to lead me to the right physicians.) Moreover, the neurologist was adamant she would find solutions to my neurological problems. She said she would consult her colleagues and do everything possible to help me.
I was completely shocked and blown away with this doctor. She knew her limitations and knew the limitations of the testing facilities in the area. She admitted she could do things locally, but the testing might be done incorrectly and might take a month to set-up and complete. If she referred me to the large medial facility, they know how to properly do the tests and could do all the tests she wanted in a very short amount of time. It seems at almost all my medial appointments I am the one who usually has to fight to get things moving. But today, I actually had a physician who was determined to get tests completed and get results quickly. She even tracked down the mobile phone number of the doctor she wanted to refer me to because that doctor was out of the office today. Wow! It as pure joy to have a physician move so quickly and be determined to help me.
I almost cancelled today’s appointment because I was convinced that the appointment would be a waste of time. But, I have been trying to be obedient and allow God to direct my path. Since a friend guided me to the pain specialist, and the pain specialist referred me on to this doctor, I decided to give this appointment a chance. Who knew God had such an amazing doctor waiting in store for me!?
“For My thoughts are not your thoughts, neither are your ways My ways, says the LORD. For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts.” (Isaiah 55:8-9)
Tuesday, February 27, 2018
Thursday, February 22, 2018
Not abandoned after all
Eight years ago, I traveled many hundreds of miles to a large medical facility in hopes of finding out what was ailing me. I saw specialists in many different disciplines and underwent five weeks of testing. At the end of the day, we had few answers. My postural orthostatic tachycardia syndrome (POTS) was reconfirmed, and my GI dysmotility was found to be severely affecting my stomach and small intestines (which was already highly suspected).
The one highlight of my long stay at the medical center was finding an exceptional doctor. She was kind, caring and actually seemed to understand how debilitating my conditions were. She never brushed off my symptoms. Anything I brought up in my appointments with the physician, she took very seriously and would try to seek remedies for the issues. Unfortunately, the last time I saw her, I was informed she was moving across the country to work at another medical facility. I was broken-hearted.
Several months later, I developed severe GI issues. I traveled back to the large medical facility. Unfortunately, I was assigned a resident doctor who knew nothing about POTS or GI dysmotility. The doctor told me she did not believe any of the results from the testing I had completed at the medical center. She thought I had somehow faked the test results and wanted to repeat ALL the tests! Yes, she wanted me to have five weeks worth of testing repeated. Her ultimatum was if I did not have the testing re-done, she would refer me to the psych department. I did not agree to the testing and decided going to the psych department with a large stack of papers full of tests which proved I had my medical conditions was better than trying to deal with this physician.
Tonight, as I was printing off my medical records from this medical facility for an upcoming appointment, I read at the bottom of one of my GI consults this statement: “Following my transfer I would recommend this patient to follow with Dr. Fraiser.” Wow, I did not know I was supposed to have been transferred to another GI doctor! The sentence is typed at the bottom of my record away from the rest of my medical notes. I do not think I ever saw this note until tonight. Although it is very disheartening that I had to endure so much at the hands of a physician not familiar with my medical conditions, it is comforting to know that my old GI doctor did not abandon me. She had referred me on to another medical professional knowledgeable about my conditions. However, it seems I was never supposed to follow up with Dr. Frasier. God had different plans for me.
“Be strong and courageous, do not be afraid or tremble at them, for the LORD your God is the one who goes with you. He will not fail you or forsake you.” (Deuteronomy 31:6)
The one highlight of my long stay at the medical center was finding an exceptional doctor. She was kind, caring and actually seemed to understand how debilitating my conditions were. She never brushed off my symptoms. Anything I brought up in my appointments with the physician, she took very seriously and would try to seek remedies for the issues. Unfortunately, the last time I saw her, I was informed she was moving across the country to work at another medical facility. I was broken-hearted.
Several months later, I developed severe GI issues. I traveled back to the large medical facility. Unfortunately, I was assigned a resident doctor who knew nothing about POTS or GI dysmotility. The doctor told me she did not believe any of the results from the testing I had completed at the medical center. She thought I had somehow faked the test results and wanted to repeat ALL the tests! Yes, she wanted me to have five weeks worth of testing repeated. Her ultimatum was if I did not have the testing re-done, she would refer me to the psych department. I did not agree to the testing and decided going to the psych department with a large stack of papers full of tests which proved I had my medical conditions was better than trying to deal with this physician.
Tonight, as I was printing off my medical records from this medical facility for an upcoming appointment, I read at the bottom of one of my GI consults this statement: “Following my transfer I would recommend this patient to follow with Dr. Fraiser.” Wow, I did not know I was supposed to have been transferred to another GI doctor! The sentence is typed at the bottom of my record away from the rest of my medical notes. I do not think I ever saw this note until tonight. Although it is very disheartening that I had to endure so much at the hands of a physician not familiar with my medical conditions, it is comforting to know that my old GI doctor did not abandon me. She had referred me on to another medical professional knowledgeable about my conditions. However, it seems I was never supposed to follow up with Dr. Frasier. God had different plans for me.
“Be strong and courageous, do not be afraid or tremble at them, for the LORD your God is the one who goes with you. He will not fail you or forsake you.” (Deuteronomy 31:6)
Tuesday, February 20, 2018
Traveling “Perks”
A friend of mine was recently telling me about her challenges flying while using a wheelchair. As I was listening to her story, it reminded me of why I do not fly. Traveling can be very stressful...and add in needing to use a wheelchair, and it can make you go a little crazy.
One thing that always upsets me when traveling is the obligatory tip to the transport person at the airport. I often think to myself, “The disabled often are living on a tiny fixed income or perhaps no income at all. They are the ones with the least ability to dole out extra money for services they need. The transport people are paid employees and transporting the disabled is part of their job. Why must they demand a tip for doing their job?” Moreover, some airports have a knack for using as many transport people as possible. At one airport, I was handed off to FIVE different employees...and yes, they all had their hand out for a tip.
Another “perk” when flying is having the luxury of having a seat at the front of the plane. It is absolutely wonderful to not have to struggle to get to one’s seat when boarding. I LOVE being at the front of the plane and away from the noisy engines. However, one problem arises. The bathrooms are at the back of the plane. When nature calls, you either have to attempt to ignore the call or attempt to traverse the entire plane backwards and forwards while the plane rocks and rolls in the sky. The last time I flew, I could not stand or walk without falling. So, I had to crawl to the back of the plane to use the restroom. Besides the humiliation of such a task, the entire experience left me utterly exhausted. I was shaking with fatigue and then had to make the long crawl back to my seat at the front of the plane. (If I ever fly again, I think I will bring along a bed pan!)
There are numerous other challenges which can happen while traveling. The transport person does not show up at the gate to pick you up from your incoming flight. You are taken to the wrong gate and abandoned by the transport person. After being dropped off by the transport person, your gate changes and you have no way of getting yourself to the new gate (which might be a ten minute walk away from your current gate). If you travel with your own wheelchair, your wheelchair might be damaged or destroyed when it is placed in the baggage area of the plane. (Oh what fun it is to arrive at your destination without a functioning wheelchair!) And let’s not forget about all the excitement incurred at airport security. Can’t stand? They give you a FULL pat down...and sometimes a complete strip search! Airport security is also unfamiliar with medical equipment and supplies, which means they might damage or destroy your equipment or supplies when they are handling them...and sometimes they might even confiscate your medical supplies. And the list could go on and on.
I once LOVED going to the airport and venturing off on an airplane to destinations all over the world. But now that I need a wheelchair and a ventilator to breathe, I do not think I will ever journey through an airport ever again. Although I LOVE traveling, I will enjoy the comforts of home and exploring my own neck of the woods.
One thing that always upsets me when traveling is the obligatory tip to the transport person at the airport. I often think to myself, “The disabled often are living on a tiny fixed income or perhaps no income at all. They are the ones with the least ability to dole out extra money for services they need. The transport people are paid employees and transporting the disabled is part of their job. Why must they demand a tip for doing their job?” Moreover, some airports have a knack for using as many transport people as possible. At one airport, I was handed off to FIVE different employees...and yes, they all had their hand out for a tip.
Another “perk” when flying is having the luxury of having a seat at the front of the plane. It is absolutely wonderful to not have to struggle to get to one’s seat when boarding. I LOVE being at the front of the plane and away from the noisy engines. However, one problem arises. The bathrooms are at the back of the plane. When nature calls, you either have to attempt to ignore the call or attempt to traverse the entire plane backwards and forwards while the plane rocks and rolls in the sky. The last time I flew, I could not stand or walk without falling. So, I had to crawl to the back of the plane to use the restroom. Besides the humiliation of such a task, the entire experience left me utterly exhausted. I was shaking with fatigue and then had to make the long crawl back to my seat at the front of the plane. (If I ever fly again, I think I will bring along a bed pan!)
There are numerous other challenges which can happen while traveling. The transport person does not show up at the gate to pick you up from your incoming flight. You are taken to the wrong gate and abandoned by the transport person. After being dropped off by the transport person, your gate changes and you have no way of getting yourself to the new gate (which might be a ten minute walk away from your current gate). If you travel with your own wheelchair, your wheelchair might be damaged or destroyed when it is placed in the baggage area of the plane. (Oh what fun it is to arrive at your destination without a functioning wheelchair!) And let’s not forget about all the excitement incurred at airport security. Can’t stand? They give you a FULL pat down...and sometimes a complete strip search! Airport security is also unfamiliar with medical equipment and supplies, which means they might damage or destroy your equipment or supplies when they are handling them...and sometimes they might even confiscate your medical supplies. And the list could go on and on.
I once LOVED going to the airport and venturing off on an airplane to destinations all over the world. But now that I need a wheelchair and a ventilator to breathe, I do not think I will ever journey through an airport ever again. Although I LOVE traveling, I will enjoy the comforts of home and exploring my own neck of the woods.
Thursday, February 15, 2018
Diving across the finish line
As the week draws to a close, it is always a frantic frenzy trying to get everything which needs to be done completed before Shabbat. My eyes carefully watch the skies as the sun dips lower and lower. As the last hours of Friday afternoon tick by, I feel as though I am racing toward the finish line. All week, I fight and fight, using all my energy, to get through the week. Now, I am in the final stretch. I see that finish line, which signifies the start of Shabbat, fast approaching.
About a half an hour before the sun sets, I dive into my bed and across the finish line. Although it is not officially Shabbat, I always try to be ready a half hour before the sun sets so I am not caught by surprise when Shabbat officially begins. As I lie in my bed, I allow the exhaustion of this last week pass over me. How many times did I think I would run out of energy? How many times did I think I would not make it to this Shabbat? Sleep tugs at my eyelids, but unlike most of the rest of the week, I allow myself to succumb to the fatigue. When I awake a while later, I joyfully listen to the evening Shabbat services. I allow each song the cantor beautifully sings to wash away all the worries and cares from this week. I gratefully listen to the elegant music and praise God I am not in the hospital. Every Shabbat I am not in the hospital, I count it as one of God’s abundant blessings. For me, there is nothing which spoils a week like spending my precious Shabbat in the confines of a medical institution. As much as one tries, there is no rest when one is hospitalized.
As I go through Saturday, I stay mostly in bed, doing what God commands, resting and trying to keep this day set apart from the rest of the week. I pray; I continue reading my way through the Bible; I read this week’s Torah portion; I thank God for this day of rest. I slowly start to feel energy revive my fatigue-laden body. As the day draws to a close, I start to become anxious. My mind starts thinking about the week ahead, about everything which must be accomplished. I try to stay focused on the day, but the worries of the world threaten to overtake my day of rest. As the sun drifts lower and lower in the sky, my body is revved up, anticipating the start of another week, of another race to the Shabbat finish line. As the last few rays of the sun gleam across the sky, I feel my body tense up, eagerly waiting for Shabbat to end. Five minutes after the sun sets, I am out of bed, running the race of another week. Until next Shabbat, may your week be full of love, joy and shalom!
About a half an hour before the sun sets, I dive into my bed and across the finish line. Although it is not officially Shabbat, I always try to be ready a half hour before the sun sets so I am not caught by surprise when Shabbat officially begins. As I lie in my bed, I allow the exhaustion of this last week pass over me. How many times did I think I would run out of energy? How many times did I think I would not make it to this Shabbat? Sleep tugs at my eyelids, but unlike most of the rest of the week, I allow myself to succumb to the fatigue. When I awake a while later, I joyfully listen to the evening Shabbat services. I allow each song the cantor beautifully sings to wash away all the worries and cares from this week. I gratefully listen to the elegant music and praise God I am not in the hospital. Every Shabbat I am not in the hospital, I count it as one of God’s abundant blessings. For me, there is nothing which spoils a week like spending my precious Shabbat in the confines of a medical institution. As much as one tries, there is no rest when one is hospitalized.
As I go through Saturday, I stay mostly in bed, doing what God commands, resting and trying to keep this day set apart from the rest of the week. I pray; I continue reading my way through the Bible; I read this week’s Torah portion; I thank God for this day of rest. I slowly start to feel energy revive my fatigue-laden body. As the day draws to a close, I start to become anxious. My mind starts thinking about the week ahead, about everything which must be accomplished. I try to stay focused on the day, but the worries of the world threaten to overtake my day of rest. As the sun drifts lower and lower in the sky, my body is revved up, anticipating the start of another week, of another race to the Shabbat finish line. As the last few rays of the sun gleam across the sky, I feel my body tense up, eagerly waiting for Shabbat to end. Five minutes after the sun sets, I am out of bed, running the race of another week. Until next Shabbat, may your week be full of love, joy and shalom!
Tuesday, February 13, 2018
Pretending to be well
As I sit in Sunday school, I try desperately to pay attention. I try desperately to focus. The early hour of the morning is causing my body to protest--my heart races, my breathing is ragged, my eyelids droop, my whole body wants to shake uncontrollably from fatigue. As each symptom slams into my consciousness, I use every ounce of energy to suppress these symptoms. The thoughts, "Put on a smiling face, keep your eyes open, pretend to follow what is being said in class..." stream through my head.
As fatigue and lack of energy threaten to overtake me, a dear member in my Sunday school class tells me, "You must be on the road to recovery. You look great today." I smile and breathe a sigh of relief. "It's working. No one seems to notice how exhausted I am today. Praise be to God. I am able to once again hide my poor health to those around me."
This is one example of how I live my life anytime I leave my house. No matter how sick I am, I always try to feign wellness. I try never to let my symptoms show; I try always to be upbeat and cheerful. Some days, as much as I would like to whine and complain about how miserable I feel, I know no one likes to hang around someone who is chronically ill. Since I cannot change my health, the one thing I can change is the way I present myself to the world. "Hold your head up, smile and pretend to be well. The world is watching, and the world does not understand what it is like to be constantly battling so many symptoms. Keep going forward; keep fighting. It is almost time to go home. It is almost time to go to bed. It is almost time to stop pretending."
As fatigue and lack of energy threaten to overtake me, a dear member in my Sunday school class tells me, "You must be on the road to recovery. You look great today." I smile and breathe a sigh of relief. "It's working. No one seems to notice how exhausted I am today. Praise be to God. I am able to once again hide my poor health to those around me."
This is one example of how I live my life anytime I leave my house. No matter how sick I am, I always try to feign wellness. I try never to let my symptoms show; I try always to be upbeat and cheerful. Some days, as much as I would like to whine and complain about how miserable I feel, I know no one likes to hang around someone who is chronically ill. Since I cannot change my health, the one thing I can change is the way I present myself to the world. "Hold your head up, smile and pretend to be well. The world is watching, and the world does not understand what it is like to be constantly battling so many symptoms. Keep going forward; keep fighting. It is almost time to go home. It is almost time to go to bed. It is almost time to stop pretending."
Thursday, February 8, 2018
Trying not to be difficult
As I sit in an exam room, I think how to craft my story. I know I am a difficult medical case. I know if I actually tell the doctor all my diagnoses and symptoms, I will be sent to the psych department...because it is not possible to have so many things wrong with a person. (Although, on a side note, psych doctors have been some of the nicest people I have ever met. They often seem perplexed why I have been referred to their department. I am always told I am sane, and my symptoms are real. One psychiatrist even told me I was the sanest person he has ever met. I am still trying to figure out if this is a compliment or not.)
I rehearse in my brain what to say to the physician. What details do I include? What details do I exclude? Often, it seems, despite my best efforts of trying not to be difficult, the clinician is blinded by the words “Mitochondrial Disease” on my chart. Fear and frustration often plague the medical professional. The reaction of many is a raised tone of voice, and the demand that I never come back to their office again! I am frequently told, “You are a complicated case. Go somewhere else for medical care.” Rejected, I often sit in the car wondering where I went wrong. I often just have a simple problem requiring minor medical intervention...but I often am denied any medical treatment because my chart says I have Mitochondrial Disease.
I keep on keeping on, fighting to get medical treatment. As frustrated as some situations leave me, I try always to be polite. The Bible says to respect those in authority. So, with much grace and holding of my tongue, I try to refrain from arguing with the doctor. I often attempt to subtly steer the physician in the right direction if I know we are going down the wrong rabbit hole...but my suggestions are often ignored or dismissed. I try to be obedient to the clinician’s demands, even if I know things will probably end badly. I endure so possibly I might be able to receive the correct medical treatment. Often, when the wrong path is taken, I am the one who receives the blame for the treatment not working or for the test result coming back wrong. I try my best to keep my head up and keep the tears from streaming down my face. On to the next appointment.
I rehearse in my brain what to say to the physician. What details do I include? What details do I exclude? Often, it seems, despite my best efforts of trying not to be difficult, the clinician is blinded by the words “Mitochondrial Disease” on my chart. Fear and frustration often plague the medical professional. The reaction of many is a raised tone of voice, and the demand that I never come back to their office again! I am frequently told, “You are a complicated case. Go somewhere else for medical care.” Rejected, I often sit in the car wondering where I went wrong. I often just have a simple problem requiring minor medical intervention...but I often am denied any medical treatment because my chart says I have Mitochondrial Disease.
I keep on keeping on, fighting to get medical treatment. As frustrated as some situations leave me, I try always to be polite. The Bible says to respect those in authority. So, with much grace and holding of my tongue, I try to refrain from arguing with the doctor. I often attempt to subtly steer the physician in the right direction if I know we are going down the wrong rabbit hole...but my suggestions are often ignored or dismissed. I try to be obedient to the clinician’s demands, even if I know things will probably end badly. I endure so possibly I might be able to receive the correct medical treatment. Often, when the wrong path is taken, I am the one who receives the blame for the treatment not working or for the test result coming back wrong. I try my best to keep my head up and keep the tears from streaming down my face. On to the next appointment.
Tuesday, February 6, 2018
Leaving the past, pressing toward the future
After becoming severely sick with Mitochondrial Disease nine years ago, I found myself stuck in a rut. My friends tried to feel compassion for my downward health spiral, but when you are healthy and still full of lots of energy, it is hard to imagine a life in which just getting out of bed takes a tremendous amount of energy. I have tried to stay friends with my acquaintances from the past, but it is always a struggle. They know what my life used to be and what it is now. As hard as they try to be understanding, they sometimes say things which can be absolutely devastating. "You graduated at the top of the class and had high ambitions of going on to university. Now look at you (pointing to me struggling to sit upright in my wheelchair)." Yes, it is true. My life was once brimming with hopes and dreams of achieving great things. Now, it seems, I am just grateful every day I am not hospitalized.
As time has progressed, I have moved away from my old friends and have made new friends. New friends are always a blessing because they do not know my past. Most people assume I have always been disabled and have always used a ventilator to breathe. Perhaps it is just hiding from my past, but I love it when people do not compare my present life to the life I once lived. It is hard to live with a chronic medical condition, and it is even harder to endure when people are always reminding me of my past. New friends are grateful for the things I can do today. They give praises for accomplishing small tasks, which give me confidence and hope that the little things in life do matter. It is hard to live a life of broken dreams. My past ambitions are always lurking around corners and in the most unexpected places. As hard as it is to forget the past and to let go of my old life, God continues to send new people into my life, making it easier and easier to live my current life and press on toward the future.
As time has progressed, I have moved away from my old friends and have made new friends. New friends are always a blessing because they do not know my past. Most people assume I have always been disabled and have always used a ventilator to breathe. Perhaps it is just hiding from my past, but I love it when people do not compare my present life to the life I once lived. It is hard to live with a chronic medical condition, and it is even harder to endure when people are always reminding me of my past. New friends are grateful for the things I can do today. They give praises for accomplishing small tasks, which give me confidence and hope that the little things in life do matter. It is hard to live a life of broken dreams. My past ambitions are always lurking around corners and in the most unexpected places. As hard as it is to forget the past and to let go of my old life, God continues to send new people into my life, making it easier and easier to live my current life and press on toward the future.
Thursday, February 1, 2018
187 days...and counting
As I was reading a friend’s Facebook post about her family being sick with the flu, her words struck deep within me: “If you are healthy right now, revel in it.” I thought to myself, “Yes, what a gift it is to be healthy.” Besides having all my health challenges from Mitochondrial Disease, I have been fighting off a respiratory infection for 187 days...and as of a week ago, I now have at least two different bacteria throwing parties in my lungs.
My life seems to be a boring round of symptoms. Coughing and fevers continually wake me up at night. During the day, fevers constantly wax and wane; exhaustion often causes me to take numerous naps. Add in violent coughing spells, mucus clogging my trach tube, nebulizer treatments, muscle fatigue, headaches and just feeling like I am going to collapse from having no energy, and that is pretty much my day.
I try to feel compassion for folks when I see they are sick. But part of me is a bit envious. In a few days to a few weeks, these loved ones will be back on their feet again and will be feeling well again. I sigh. It’s been over six months since I first contracted a respiratory infection. The hope of ever being free from these infections seems to be slipping away. And if I ever do recover, I will still have Mitochondrial Disease and will always be at risk of contracting another respiratory infection. What a blessing it is to have one’s health.
During all this I have been praying...praying God will answer my prayers in a favorable way. I have been praying that despite my pulmonologist’s schedule being completely full, somehow, some way, I will be able to get an appointment to see her. God has moved many mountains in the past. Perhaps He will move another one very soon.
My life seems to be a boring round of symptoms. Coughing and fevers continually wake me up at night. During the day, fevers constantly wax and wane; exhaustion often causes me to take numerous naps. Add in violent coughing spells, mucus clogging my trach tube, nebulizer treatments, muscle fatigue, headaches and just feeling like I am going to collapse from having no energy, and that is pretty much my day.
I try to feel compassion for folks when I see they are sick. But part of me is a bit envious. In a few days to a few weeks, these loved ones will be back on their feet again and will be feeling well again. I sigh. It’s been over six months since I first contracted a respiratory infection. The hope of ever being free from these infections seems to be slipping away. And if I ever do recover, I will still have Mitochondrial Disease and will always be at risk of contracting another respiratory infection. What a blessing it is to have one’s health.
During all this I have been praying...praying God will answer my prayers in a favorable way. I have been praying that despite my pulmonologist’s schedule being completely full, somehow, some way, I will be able to get an appointment to see her. God has moved many mountains in the past. Perhaps He will move another one very soon.
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