One step at a time and we find our way. As many of you know, I have been dealing with unknowns for years now. More recently, about 4 or 5 months ago, my condition and weight became a much greater concern for my doctors and myself. The doctors started to push again for more answers. It began with an idea to insert a feeding tube because most of my symptoms throughout my body were flaring up in addition to continued weight loss on an already very thin body. The feeding tube turned out to be a no-go but that got the ball rolling in other directions. A referral to Johns Hopkins Medical Center in Baltimore, Maryland with the #3 leading gastroenterologist/ functional medicine doctor in the country along with a referral to an internal medicine doctor/ gastroenterologist in Dallas, TX to be evaluated for a gastric stimulator. I have trudged my way through this jungle of unknowns and we finally have a clear view, I am so proud to announce.
I was worried that I would not be able to make my uncle's memorial services after his death last month because I was feeling so awful and so weak. God has His hand on everything. The Dallas gastroenterologist called just days before the services and wanted to begin the testing necessary to be approved for the gastric stimulator. I was able to attend my uncle's service as well as take care of the testing. "What did the testing show?", you might be saying. Well, I am in need of the gastric stimulator. After fasting for more than 12 hours, I still had food in my stomach when he tried to conduct an endoscopy (most people move food from their stomach to the small intestine in 30-90 minutes). A Smart Pill study was conducted as well. It showed that food stayed in my stomach for 17 hours or more. When the results were reviewed I was able to come home, just in time to prepare for Baltimore.
About a week after returning from Texas, I was headed in Baltimore's direction with high anxiety about Johns Hopkins and what this doctor would say. His name is Gerard Mullin. He wrote a book, Inside Tract, that was recommended to me a few years back. He is a functional medicine doctor, which means he uses not only western medicine but also nutritional and holistic treatments as well. I was afraid he was going to offer me some outrageous diet that would be impossible to adhere to in rural America or that something even more remarkable would be recommended. To my surprise, he agreed with the path I am on. He agreed with the Dallas doctor saying, "The gastric stimulator is a must." He went on to offer a recommendation that I see a naturopathic doctor as well as a nutritionist specially trained in diabetics and gastroparetics. His explanation was, food stays in my stomach so long without the aid of stomach acid or any enzymes to break it down or kill bacteria. The food ferments in my stomach before moving on to my small intestine, carrying dangerous bacteria. The goal is to balance out the bacteria in my gut all together and with that I should feel better on a day to day basis.
So, here I am. Five years after being sent to the Mayo Clinic thinking I was only a Type I diabetic. Five years after thinking that everyone around me, including my doctors, were being dramatic about my health. Five years after being terrified by hearing the words "Mayo Clinic", thinking only people who are near death go there. I was wrong. I was ignoring many symptoms and trying to push through. I was the dramatic one thinking only people near death are seen at the Mayo Clinic. Five years of diagnosis on top of diagnosis on top of life style changes and more life style changes. Five years after thinking no one would figure out what was wrong until it was too late. Well, guess what! We have answers. Not just partial answers, but the full picture is finally in view. The full picture is now in view AND all the specialists, with all their egos, agree. Now, I can exhale and it is such a relief!
The end result? Can you relate to any of this? We can help each other.
I am Lauren.
I am 30 years old.
I have Autoimmune Polyendocrine Syndrome Type II (Schmidt Syndrome).
I have Hashimoto's Thyroiditis treated with hormone replacement medications.
I have Type I diabetes treated with insulin through an insulin pump.
I have Interstitial Cystitis in remission currently.
I have Epilepsy treated with anti-convulsants and natural remedies.
I have Celiac Disease treated with a strict gluten free diet.
I have Undifferentiated Connective Tissue disease treated with an antimalarial.
I have Pernicious Anemia treated with B-12 injections and an ulcer preventing medication.
I have pancreatic insufficiency treated with digestive enzymes.
I have gastroparesis currently being treated with Erythromycin, but soon to be treated by the gastric stimulator.
I have inflammatory bowel disease (not currently labeled as Crohn's or Ulcerative Colitis) currently being treated with pain management due to it likely being caused by the lack of digestion in my upper digestive tract.
I have an autonomic nervous system disorder treated with anti-convulsants as well.
I have a husband and a beautiful son.
I enjoy music, the outdoors, and family.
Learning is a passion.
I like to read.
Finding the good in every person comes naturally along with naivety, but I wouldn't have it any other way.
I am Lauren.
We have answers. We have direction. We have something tangible to hold on to and move forward. I feel like I can finally accept what is going on. I feel like I can relax and let the doctors take over. I can settle in to a new normal. Life is ever changing, but a life style is the hardest thing to change. I feel ready to take on the world and hopeful that my strong mind will strengthen my body as we begin new treatment. I feel empowered. Five years ago, getting to the bottom of this seemed so far off, impossible really. I struggled, I suffered, I whined and complained, I had melt-downs, I denied, I kept going, and I finally feel myself starting to shine through again.
This little light of mine
I'm gonna let it shine
Let it shine
Let it shine
Let it shine
Wednesday, May 29, 2013
Thursday, April 18, 2013
The Void ( A Tribute)
I really don't know where to begin...except at the beginning. Two days ago we all got a call that none of us expected. My uncle, Boyd Lunsford, had suffered a heart attack over night. From those early morning hours until late that morning we all collectively prayed and cried, yet all of us geographically far from one another. Many of my family members have built their lives in Texas, particularly the Dallas/ Ft. Worth area, but some further south. As many could, they rushed to be by his side and to be with family. Unfortunately, we lost him late that morning.
I would like to put this into perspective for my readers. A few blog posts back, June 2012 as a matter of fact, I wrote about my cousin who passed suddenly. That was his daughter. The third child he has lost in addition to a grandchild. Then, in October of 2012, not even six months later his brother passed (another uncle of mine). This recent loss, has again left our family shell shocked still healing from the open wounds we have been mending. As all tragic things do, this got me to go deep inside myself.
This site was set up to discuss the daily joys and struggles of living with multiple auto immune disorders. As we all know, one facet of our lives does not define us. It is simply a piece of the puzzle that makes one whole. I had been down with the flu since Friday. My doctors prescribed Tamiflu as the flu can be dangerous to all individuals but especially for those with compromised immune systems. By Monday, I felt almost no relief so back to the doctor I go and a new prescription is written for an antibiotic as I am also battling strep. So when Tuesday morning rolled around I was in no mood for phone calls. I ignored them. Within a few minutes if not an hour I received an email from my sister. That's where I got the news. I quickly got in touch with family in Texas and stayed close to my phone waiting for the best possible news. It certainly ended much differently than we all hoped and prayed. In the end, however, I do feel that my uncle is where his heart may have been for some time now. If nothing else, he no longer has the daily trials we all see.
The next morning, as sick as I had been, my adrenaline, anxiety, and grief would not let me rest. I walked my son to school. Even with his enormous imagination and joyful way of describing it along our walk, I still felt pent up emotion. When I got home I took my dogs out for a short walk, knowing if I pushed myself too hard I would be in trouble, but I had to 'release'. On that walk something happened to me. It was particularly peaceful.
I could vividly smell the April morning air in our small town, my uncle's home town and where he will be laid to rest with those who passed before. I saw a beautiful bushel of purple flowers. Purple is my favorite color and purple flowers hold a special place in my heart. It's like a high dose of serenity. My uncle was a spiritual man. Anytime he would visit home he would come by and talk to me or take me to visit with him at his hotel. He always had a story to tell and it usually ended with spiritual wisdom. I felt that rushing through me as I walked along the canal with my dogs. I wondered how these past few months had been so difficult, but in times of extreme stress I can somehow get outside of myself and feel weightless. I talked and talked to my uncle and before I knew it my heart felt a little lighter.
Now, days have passed, memories are rushing in and family is tying up loose ends. Services have been scheduled and we are all just trying to cope. Something resonates with me from that walk yesterday morning, alone with my thoughts and words to my uncle. My roller coaster, my emotions and rationality ebbing and flowing, my sense of loneliness and feeling lost all has a reason. There is a void in my life right now I never imagine would affect me so greatly. My sister.
About 8 years ago my sister and her husband decided to follow their dreams. They threw caution to the wind and moved from New Mexico (the only place my sister and I have called home) and moved to California. They met in college. I could try to pretend I understand what they do, wanted to do, or even got degrees for, but I don't. All I know is from the time I can remember my sister wanted to live in LA and have something to do with the entertainment industry. Luckily she found a match in college that suited her and off they went. At the time I had just learned I was pregnant with my son.
I have to admit I was astonished. I was amazed that all these years of talk had turned into reality. I felt so happy that my sister was spitting on everyone who had doubted her along the way, and her ambition never wavered. I was happy that she had married a man that had similar desires to her. I was happy that he encouraged her and supported her in her dreams. But I was devastated. I was hurt that they had not consulted the little sister before making this HUGE decision (as all married couples should, right?!) And to add fuel to my fire, this baby growing inside of me, I thought I could only carry with my sister there to hold my hand. But I stood strong and put on a brave face as they loaded the Uhaul and drove away from the apartment complex we both lived in. I could not be the thing that held her back. I had to let go.
Time has passed. My son was born. My sister and brother in law are slowly but surely finding their footing (not exactly a "go to college and get a nice job" kind of field). I have since been married and moved back to my hometown. I have made friends and lost friends along the way. The most trying of all has been my health, I must say. I just recently noticed how much harder it is to keep picking myself up and dusting myself off to continue moving forward. On that walk that morning after my uncle passed my light-bulb moment hit and I realized it's "The Void".
I have a void in my heart. My sister. I never thought of it completely or in the light it was shown to me on that walk, but I realized all that she meant to me. As kids (she is my only biological sister) we were always together. She, this pretty little prim and proper princess with acting coursing through her veins and I, this rough and tumble tom-boy never understanding a word she said. We had our differences and our fights, or so I thought. I remember the day my parents drove her to college and the second the car drove away from our house, I crumble to the floor in tears. I thought, "What?! I thought you'd be the happiest to see her go. What is all this?!"
Once I got to college, I went to UNM just as she did and just three years behind her, we grew so much closer. She became my best friend. I felt similar sadness when she left for California, but I thought my sadness would be replaced by knowing she was where she really wanted to be. I also thought I would grow to learn to live without her so close. I never have. Recently, that has become so unavoidably apparent.
She and I lost our father to complications of diabetes when we were young. Before his passing, my parents had spilt so my sister and I traveled from NM to CA for visits. After his passing we continued those trips to stay close with his family. Although in our small town in NM we had different identities, anywhere else we went she was by my side. Even in our town she had my back when I was too young and dumb to realize. When she went off to college, I was starting a new school and found it difficult to find friends. I realized back then, she was the good one at talking to people and analyzing situations. I didn't know how to do it on my own, comfortably. When I got to college, she was a veteran and walked me through everything from finding a place to live, a job, and teaching me about finances and my future. I always thought she was too dramatic and grown up. I always thought she worried too much. I now know, she did it for the both of us........my entire life.
Now I am in NM and she is in CA. This last year has been tumultuous for our close and extended families. I recently upgraded to a smartphone (I am technically challenged and was trying to be the driving force holding the USPS open) and so she and I have been in better contact. You know them Cali folk, all tied down to their gadgets and too busy for phone calls. For a long time I resented our lack of communication until I got the smartphone and realized the different lifestyles these two states have.....well let's face it, I was living a little in the past. These days we communicate as if we lived in the same town.
That morning walk I took, sick as a dog with my dogs just to clear my head. That morning walk to come to grips with the sudden passing of an uncle I have always learned from. He taught me or should I say showed me what I was really reaching out for all this time. My sister. My best friend. My caretaker. My financial advisor, possible lottery-winner coach, therapist, and punching bag.
I have written recent posts about feeling down and out. I have written recently how difficult it has been to open up about all of that as well as feeling like I had no where to turn. I have recently, openly written about my sense of hopelessness and feeling lost. God takes His time, but He really does have a plan for everything. He really does carry you through the most difficult parts of life. This time, I believe through my uncle, He touch me. He hugged me. He held me tight and told me the answer to the prayers I have been screaming for months and for years.
It is not friends I need. It is not that dream job I need. It is not the degrees I came short of before falling too ill to finish that I need. It is not the perfect husband or child that I need. It is and never has been about possessions. It is the one thing that has stayed strong, sturdy, faithful, loyal, and honest from my first breath. My sister. She really does complete me.
We are opposites in every aspect. Our personalities are different. Our styles are different. Our passions are different. Our approach on life is different. Even our spiritual and faith ideas do not always match up. Yet somehow, they do. So well. She makes my puzzle complete. I know God has His plan and certainly is not done with me yet, but without my sister He would not be able to complete my puzzle. He knew we needed each other. And that is something I will hold on to for the rest of my life.
I would like to put this into perspective for my readers. A few blog posts back, June 2012 as a matter of fact, I wrote about my cousin who passed suddenly. That was his daughter. The third child he has lost in addition to a grandchild. Then, in October of 2012, not even six months later his brother passed (another uncle of mine). This recent loss, has again left our family shell shocked still healing from the open wounds we have been mending. As all tragic things do, this got me to go deep inside myself.
This site was set up to discuss the daily joys and struggles of living with multiple auto immune disorders. As we all know, one facet of our lives does not define us. It is simply a piece of the puzzle that makes one whole. I had been down with the flu since Friday. My doctors prescribed Tamiflu as the flu can be dangerous to all individuals but especially for those with compromised immune systems. By Monday, I felt almost no relief so back to the doctor I go and a new prescription is written for an antibiotic as I am also battling strep. So when Tuesday morning rolled around I was in no mood for phone calls. I ignored them. Within a few minutes if not an hour I received an email from my sister. That's where I got the news. I quickly got in touch with family in Texas and stayed close to my phone waiting for the best possible news. It certainly ended much differently than we all hoped and prayed. In the end, however, I do feel that my uncle is where his heart may have been for some time now. If nothing else, he no longer has the daily trials we all see.
The next morning, as sick as I had been, my adrenaline, anxiety, and grief would not let me rest. I walked my son to school. Even with his enormous imagination and joyful way of describing it along our walk, I still felt pent up emotion. When I got home I took my dogs out for a short walk, knowing if I pushed myself too hard I would be in trouble, but I had to 'release'. On that walk something happened to me. It was particularly peaceful.
I could vividly smell the April morning air in our small town, my uncle's home town and where he will be laid to rest with those who passed before. I saw a beautiful bushel of purple flowers. Purple is my favorite color and purple flowers hold a special place in my heart. It's like a high dose of serenity. My uncle was a spiritual man. Anytime he would visit home he would come by and talk to me or take me to visit with him at his hotel. He always had a story to tell and it usually ended with spiritual wisdom. I felt that rushing through me as I walked along the canal with my dogs. I wondered how these past few months had been so difficult, but in times of extreme stress I can somehow get outside of myself and feel weightless. I talked and talked to my uncle and before I knew it my heart felt a little lighter.
Now, days have passed, memories are rushing in and family is tying up loose ends. Services have been scheduled and we are all just trying to cope. Something resonates with me from that walk yesterday morning, alone with my thoughts and words to my uncle. My roller coaster, my emotions and rationality ebbing and flowing, my sense of loneliness and feeling lost all has a reason. There is a void in my life right now I never imagine would affect me so greatly. My sister.
About 8 years ago my sister and her husband decided to follow their dreams. They threw caution to the wind and moved from New Mexico (the only place my sister and I have called home) and moved to California. They met in college. I could try to pretend I understand what they do, wanted to do, or even got degrees for, but I don't. All I know is from the time I can remember my sister wanted to live in LA and have something to do with the entertainment industry. Luckily she found a match in college that suited her and off they went. At the time I had just learned I was pregnant with my son.
I have to admit I was astonished. I was amazed that all these years of talk had turned into reality. I felt so happy that my sister was spitting on everyone who had doubted her along the way, and her ambition never wavered. I was happy that she had married a man that had similar desires to her. I was happy that he encouraged her and supported her in her dreams. But I was devastated. I was hurt that they had not consulted the little sister before making this HUGE decision (as all married couples should, right?!) And to add fuel to my fire, this baby growing inside of me, I thought I could only carry with my sister there to hold my hand. But I stood strong and put on a brave face as they loaded the Uhaul and drove away from the apartment complex we both lived in. I could not be the thing that held her back. I had to let go.
Time has passed. My son was born. My sister and brother in law are slowly but surely finding their footing (not exactly a "go to college and get a nice job" kind of field). I have since been married and moved back to my hometown. I have made friends and lost friends along the way. The most trying of all has been my health, I must say. I just recently noticed how much harder it is to keep picking myself up and dusting myself off to continue moving forward. On that walk that morning after my uncle passed my light-bulb moment hit and I realized it's "The Void".
I have a void in my heart. My sister. I never thought of it completely or in the light it was shown to me on that walk, but I realized all that she meant to me. As kids (she is my only biological sister) we were always together. She, this pretty little prim and proper princess with acting coursing through her veins and I, this rough and tumble tom-boy never understanding a word she said. We had our differences and our fights, or so I thought. I remember the day my parents drove her to college and the second the car drove away from our house, I crumble to the floor in tears. I thought, "What?! I thought you'd be the happiest to see her go. What is all this?!"
Once I got to college, I went to UNM just as she did and just three years behind her, we grew so much closer. She became my best friend. I felt similar sadness when she left for California, but I thought my sadness would be replaced by knowing she was where she really wanted to be. I also thought I would grow to learn to live without her so close. I never have. Recently, that has become so unavoidably apparent.
She and I lost our father to complications of diabetes when we were young. Before his passing, my parents had spilt so my sister and I traveled from NM to CA for visits. After his passing we continued those trips to stay close with his family. Although in our small town in NM we had different identities, anywhere else we went she was by my side. Even in our town she had my back when I was too young and dumb to realize. When she went off to college, I was starting a new school and found it difficult to find friends. I realized back then, she was the good one at talking to people and analyzing situations. I didn't know how to do it on my own, comfortably. When I got to college, she was a veteran and walked me through everything from finding a place to live, a job, and teaching me about finances and my future. I always thought she was too dramatic and grown up. I always thought she worried too much. I now know, she did it for the both of us........my entire life.
Now I am in NM and she is in CA. This last year has been tumultuous for our close and extended families. I recently upgraded to a smartphone (I am technically challenged and was trying to be the driving force holding the USPS open) and so she and I have been in better contact. You know them Cali folk, all tied down to their gadgets and too busy for phone calls. For a long time I resented our lack of communication until I got the smartphone and realized the different lifestyles these two states have.....well let's face it, I was living a little in the past. These days we communicate as if we lived in the same town.
That morning walk I took, sick as a dog with my dogs just to clear my head. That morning walk to come to grips with the sudden passing of an uncle I have always learned from. He taught me or should I say showed me what I was really reaching out for all this time. My sister. My best friend. My caretaker. My financial advisor, possible lottery-winner coach, therapist, and punching bag.
I have written recent posts about feeling down and out. I have written recently how difficult it has been to open up about all of that as well as feeling like I had no where to turn. I have recently, openly written about my sense of hopelessness and feeling lost. God takes His time, but He really does have a plan for everything. He really does carry you through the most difficult parts of life. This time, I believe through my uncle, He touch me. He hugged me. He held me tight and told me the answer to the prayers I have been screaming for months and for years.
It is not friends I need. It is not that dream job I need. It is not the degrees I came short of before falling too ill to finish that I need. It is not the perfect husband or child that I need. It is and never has been about possessions. It is the one thing that has stayed strong, sturdy, faithful, loyal, and honest from my first breath. My sister. She really does complete me.
We are opposites in every aspect. Our personalities are different. Our styles are different. Our passions are different. Our approach on life is different. Even our spiritual and faith ideas do not always match up. Yet somehow, they do. So well. She makes my puzzle complete. I know God has His plan and certainly is not done with me yet, but without my sister He would not be able to complete my puzzle. He knew we needed each other. And that is something I will hold on to for the rest of my life.
Monday, March 18, 2013
Reaping Hope
Yesterday I was inspired in church. I felt that "light bulb" moments (as I like to call them) are often useful wisdom that is gained along a lifetime. Why not share that wisdom you just gained so that it can be passed on or corrected if it's a misconception?
A week or so ago I got a card from my brother's family. It contained a gift to help us during these trying times. In addition to the thoughtful gift, this card had many scriptures written on it to help anyone going through trials. I read them over. I was so appreciative of the gift, but the card had more meaning. I have recently been leaning much more on my faith to help me. I realized several months ago that my bible, that which was my father's, is packed away in a box in storage somewhere. So, I have been using my kindle and random other places to read the bible. I, myself, still find it very difficult to understand. The language is old and often cryptic. Sometimes the message jumps right out at me, but more often than not I need a little guidance. There was a particular passage that was on the card; whereas most were written out, this one was just noted (I see now that it was too long, as many Psalm or Proverbs are) so I took a mental note to look it up later.
It was Psalm 126 '...when the Lord brought home our treasure, all delights were like a dream; in defeat, a shout of victory; in the sand, a flowing stream. Mouths that once were parched with anguish, now with shouts of joy are filled; laughter now replaces sadness for the goodness God has willed. Bring us back to former glory, lost through the year's of exiles pain. Generations long forgotten, seek God's favor to regain. Those who plant their seeds with grieving, wetting soil with falling tears, shall rejoice in time of harvest, reaping hope for all those years."
I didn't have to wait long or dig through boxes to find my bible to look up the passage. In yesterday's church service it was used, and it hit me like a ton of bricks. I was feeling so vulnerable for my last blog post. I poured my heart out, showed all my weaknesses and fears, and basically told the world I was crumbling. This passage reminded me that the crumbling that is happening is only helping to make the future brighter. It is natural, normal, and perfectly fine for people to show emotions as I did. It is actually useful. Just hearing that coming from Him made me feel like I am doing fine.
Then the liturgist stood up to read more passages. Before she did her duty, however, she stopped to let the congregation know that her son was coming home from his last tour of duty. She explained that her son has been in the military 18 years and has made a career out of it. I don't remember exactly how many tours she said he has already done, but she said with confidence that this was his last. She was pleased to share that after all these years he is returning home safe. All of this was said with extreme joy but covered with emotion. Her voice shook as she spoke and she had to gather herself before moving on to her Sunday duties.
This was another "light bulb" moment for me. I thought of how incredibly stressful it would be for my own son to be serving for his country in a war. The fear every morning waking up wondering if he was going to be OK and the fear at night wondering if he will see tomorrow. The shear feeling of having no certainty of seeing your loved one again. Then my mind branched off to a possible wife or kids this soldier may have, aunts, uncles, cousins, siblings, etc. Having a family member serving must make so many proud of their loved one's sacrifices, but we cannot forget all the families go through here at home. I thought, "...and I've been feeling sorry for myself?! I wouldn't trade this pain and anguish for that. I don't have it that bad." I will be taken care of, and for the time being I am spending it with my family as we all should be. I just felt her joy along with all she must have felt these last 18 years.
I have a lot on my plate. This camel's back is about broken. Or so I thought last week and the weeks before as things just seemed to continue to pile on. My husband and son are going through this with me everyday. Although they do not feel the physical things I go through, they are on this journey in a different way. At this point, I think it is so overwhelming, none of us can see the others' perspective so we do have short fuses and occasionally overreact to unrelated things. But, I look at us as a unit, as a team, and we will get through this together. This will make us stronger, and we will have a greater understanding of each other thereafter (I can only assume).
Chronic illness, in any form, is a devastating and difficult life to live. This not only applies to the patient, but the families as well. I cannot equate illness to serving in a war by any stretch of the imagination. The only thought I can give is that the grass is NOT always greener on the other side. YOU do not have it worse than.......there is always a worse possibility. In tough times, that is the most difficult thing to see other than the light at the end of the tunnel. Ultimately, everyone involved is affected. But we cannot take away from what the actual patient goes through or (to stick to topic) what the soldier goes through while serving.
It changes us. Trauma, stress, anxiety, and instability changes a person. Time changes a person. Change is the only thing in this world we can expect to happen. The problem may lie in acceptance. I have heard stories of soldiers coming back and their families talking about how much they have changed. Even veterans are spoken about in that manner, "Well, before the war...." The chronically ill are very similar in the regard of these extreme emotions being dragged out over long periods of time. I hope with this information we can all start to look at each other with a little more acceptance, considering we have no idea what glasses the other person is looking through.
Ultimately, what I got out of all this is:
1) I have got to get the box I am sure my bible is in and get it out.
2) I want to find an accessible way for me to study the bible to gain a better understanding (it's the information junkie in me, craving anything).
3) I have to pick myself up, dust myself off, and push away the thoughts that I have such a hard life.
4) Remind myself how cushioned and comfy my life is with my husband and son and our little home.
5) Stop looking at negative emotions as negatives. They are our path to positivity.
A week or so ago I got a card from my brother's family. It contained a gift to help us during these trying times. In addition to the thoughtful gift, this card had many scriptures written on it to help anyone going through trials. I read them over. I was so appreciative of the gift, but the card had more meaning. I have recently been leaning much more on my faith to help me. I realized several months ago that my bible, that which was my father's, is packed away in a box in storage somewhere. So, I have been using my kindle and random other places to read the bible. I, myself, still find it very difficult to understand. The language is old and often cryptic. Sometimes the message jumps right out at me, but more often than not I need a little guidance. There was a particular passage that was on the card; whereas most were written out, this one was just noted (I see now that it was too long, as many Psalm or Proverbs are) so I took a mental note to look it up later.
It was Psalm 126 '...when the Lord brought home our treasure, all delights were like a dream; in defeat, a shout of victory; in the sand, a flowing stream. Mouths that once were parched with anguish, now with shouts of joy are filled; laughter now replaces sadness for the goodness God has willed. Bring us back to former glory, lost through the year's of exiles pain. Generations long forgotten, seek God's favor to regain. Those who plant their seeds with grieving, wetting soil with falling tears, shall rejoice in time of harvest, reaping hope for all those years."
I didn't have to wait long or dig through boxes to find my bible to look up the passage. In yesterday's church service it was used, and it hit me like a ton of bricks. I was feeling so vulnerable for my last blog post. I poured my heart out, showed all my weaknesses and fears, and basically told the world I was crumbling. This passage reminded me that the crumbling that is happening is only helping to make the future brighter. It is natural, normal, and perfectly fine for people to show emotions as I did. It is actually useful. Just hearing that coming from Him made me feel like I am doing fine.
Then the liturgist stood up to read more passages. Before she did her duty, however, she stopped to let the congregation know that her son was coming home from his last tour of duty. She explained that her son has been in the military 18 years and has made a career out of it. I don't remember exactly how many tours she said he has already done, but she said with confidence that this was his last. She was pleased to share that after all these years he is returning home safe. All of this was said with extreme joy but covered with emotion. Her voice shook as she spoke and she had to gather herself before moving on to her Sunday duties.
This was another "light bulb" moment for me. I thought of how incredibly stressful it would be for my own son to be serving for his country in a war. The fear every morning waking up wondering if he was going to be OK and the fear at night wondering if he will see tomorrow. The shear feeling of having no certainty of seeing your loved one again. Then my mind branched off to a possible wife or kids this soldier may have, aunts, uncles, cousins, siblings, etc. Having a family member serving must make so many proud of their loved one's sacrifices, but we cannot forget all the families go through here at home. I thought, "...and I've been feeling sorry for myself?! I wouldn't trade this pain and anguish for that. I don't have it that bad." I will be taken care of, and for the time being I am spending it with my family as we all should be. I just felt her joy along with all she must have felt these last 18 years.
I have a lot on my plate. This camel's back is about broken. Or so I thought last week and the weeks before as things just seemed to continue to pile on. My husband and son are going through this with me everyday. Although they do not feel the physical things I go through, they are on this journey in a different way. At this point, I think it is so overwhelming, none of us can see the others' perspective so we do have short fuses and occasionally overreact to unrelated things. But, I look at us as a unit, as a team, and we will get through this together. This will make us stronger, and we will have a greater understanding of each other thereafter (I can only assume).
Chronic illness, in any form, is a devastating and difficult life to live. This not only applies to the patient, but the families as well. I cannot equate illness to serving in a war by any stretch of the imagination. The only thought I can give is that the grass is NOT always greener on the other side. YOU do not have it worse than.......there is always a worse possibility. In tough times, that is the most difficult thing to see other than the light at the end of the tunnel. Ultimately, everyone involved is affected. But we cannot take away from what the actual patient goes through or (to stick to topic) what the soldier goes through while serving.
It changes us. Trauma, stress, anxiety, and instability changes a person. Time changes a person. Change is the only thing in this world we can expect to happen. The problem may lie in acceptance. I have heard stories of soldiers coming back and their families talking about how much they have changed. Even veterans are spoken about in that manner, "Well, before the war...." The chronically ill are very similar in the regard of these extreme emotions being dragged out over long periods of time. I hope with this information we can all start to look at each other with a little more acceptance, considering we have no idea what glasses the other person is looking through.
Ultimately, what I got out of all this is:
1) I have got to get the box I am sure my bible is in and get it out.
2) I want to find an accessible way for me to study the bible to gain a better understanding (it's the information junkie in me, craving anything).
3) I have to pick myself up, dust myself off, and push away the thoughts that I have such a hard life.
4) Remind myself how cushioned and comfy my life is with my husband and son and our little home.
5) Stop looking at negative emotions as negatives. They are our path to positivity.
Tuesday, March 12, 2013
Anyone got a flashlight?
I am just going to let this be a venting session. I have no agenda. No particular topic in mind that needs to be discussed or addressed. I just feel like I have completely lost myself in all that has gone on lately so I am doing a little soul searching or shall we call it "Lauren searching". I remember being a funny, naive, innocent, ambitious, tenacious, giving, loving, honest, and positive person. That girl is stuck inside of me somewhere.
I recently had the privilege of speaking with someone who does energy work. This is something similar to therapy, but also very different. It is about centering the mind and body. It's about balancing the energy in your body so that the positive energies can flow. Granted, I am no expert so that is my very basic explanation. Either way, the opportunity brought to my attention some things I hadn't realized about myself while also bringing to light or validating that which I did know about myself. For some reason, however, by the end of the call I did not feel a sense of relief or calm, as many say they do. But it did bring to my attention what things I may need to focus on to help balance me out.
You see, my health has been in turmoil for some time now. Each time we (my family and I) feel like we gain some ground, it seems to knock something else off and the cycle starts again. Right now, the most concerning issue is my digestion or lack thereof. At this point, I am scheduled to see a specialist at Johns Hopkins in May. I have been evaluated in Dallas for a gastric stimulator. In the small town where I live, my primary care physician sold her practice to a nurse practitioner (not quite up to par for my situation), but has assured me that she is only semi-retired and will follow my case closely. In the meantime, I am living on protein shakes, eggs, toast, and bananas. I force down a semi-normal meal for lunch for the pure sake of feeling and tasting the food in my mouth. I also allow myself one Zevia a day (an all natural diet soda). All the while, I am still in pain on a daily basis, if not just plain nauseated. I have to force my deprived body to exercise just to help move food along and to help maintain an appetite for the limited amount of food I do get to eat.
In my dreams I eat really unhealthy, hearty meals like cheeseburgers with fries and a chocolate milkshake. I update my resume and apply for jobs as a psych nurse or a nutritionist. I go for bike rides with my son in the New Mexico sun. I make elaborate meals for my hard working husband. I shampoo my carpets. I give my dogs a bath. I do all these things with so much joy. Then, I wake up for a normal day, which should be joyful enough with the blessings I have. Instead it is tainted with pain, fear, anxiety, and desire for respite.
I tell myself everyday, "Remember before you were this sick, as a child, you would hate getting up everyday for school. You always felt tired and dreaded school. Until you got up and got moving. The days turned out fine. This is the same thing. It is just a new normal. Be grateful for the joys and blessings." That's my intellect talking. That's my logic and rational brain. That same brain told me yesterday, as yesterday was the epitome of awful belly-wise, "What is this doing to your son? He cannot come home from school and see you like this. Not often. He needs to know there is meaning and joy in the world. If he sees his mother, a role-model, defeated and accepting defeat on the sofa with no makeup and a mess of hair, he will think this is the norm. This will not be his norm. He will lead a happy life with purpose and be grateful. You have to instill that in him." Unfortunately, the physical and emotional toll has run too high.
I can put on a good show. I get around town independently for the most part. I have responsibilities I take care of and follow through on. I go to church. I take a shower, do my make-up, style my hair, and brush my teeth. I cannot wear fitted clothing because of the pressure it adds to my belly so my thin frame is usually in something casual, but I try to keep it nice and age appropriate. But inside I am feeling like an out casted middle schooler who hasn't had a real meal or a good night's sleep in years.
The gastric stimulator is a possibility and seems to be my most viable option for better quality of life, but it is ultimately up to the doctors and insurance company. When I read reports about other patients who got them, I was astonished by how close their stories were to my own. I was actually elated because many of them spoke of waking up from the procedure craving their favorite foods. It takes time for your system to be able to handle those foods, but within hours of the procedure relief is often felt. Needless to say, this made me a little anxious to get the process started.
I spoke with the doctor in Dallas today. I saw him three weeks ago. I called him last week because I had heard nothing, but he was still looking over things. I called him today. Surely a third week has given him time to look it over, consult, etc. When I saw him he said he generally turns people away for these stimulators, but that does not seem to be the case for me. He kept all my medical records and said he needed some time to comb through them, to be thorough because my case is very complicated given the multiple comorbidities. I appreciate and respect his time and attention to my delicate case. Most doctors panic at the thought of my chart.
After relaying to the woman on the phone that I was curious about the status of my appointment because he still has my copies of my medical records and it has been three weeks with no news whatsoever. She politely (she is very nice, as is the doctor) explained that "your case is a very complicated one..." that's where I started to tune out. When she was done I simply said, "After three weeks I am still in the same position, if not worse than when I saw him, I would just like to know if this is even going to be a possibility for me or should I just bank on Johns Hopkins?" She apologetically told me that he is still considering me a candidate and that's why he is still needing my information. He just wants to be sure he doesn't rock the boat with everything that is going on inside my body. She said she would let the doctor know I would like my records back (mostly because he has my allergy list and it is too long for me to remember, possibly leading to my increased pain) and that I was anxious. I asked her to just let him know I am anxious to enjoy life with my seven year old.
And so I have no choice but to wait. Intellectually, logically, rationally I know that this doctor is doing his absolute best to insure I get the best treatment. I know that Johns Hopkins is an amazing facility and the specialist I am scheduled to see has some amazing credentials. I know that I am on a path to respite. I know that I am a fighter or I would not have made it this far. I know that there is meaning and purpose to life. I know that I am blessed to have my son, husband, a roof over our heads, clothes, and some little luxuries. I know I am blessed to have my in-laws near to help at the drop of a hat. I know that God has a plan and is carrying me through these trying times. The truth is, I don't feel like myself anymore.
I feel lost. I feel desperate. I feel deprived. I feel guilty for the burden it adds to my family. I feel guilty I cannot be the mother, friend, wife, daughter, sister that I once was and strive to be. I feel angry- if I hear one more time how "complicated" my case is, I swear I will slap someone (completely out of character). I am also angry that things aren't moving along faster. Did I wait too long to complain enough for someone to realize I was serious? I feel saddened by the fact that this has consumed me. I thought I was above that for some reason. I thought I could conquer anything and nothing could hold me down. This, this APS Type II, these multiple auto-immunities, this daily torture of lack of food or painful ingestion/digestion of food, this daily grind, this regimen, this has consumed me.
I talk to my husband. I talk to my family members. I occasionally talk to a friend. You know, with every person there is something different you can share. With some you feel comfortable laying it all out there. With others it is more difficult to be open. I can honestly say I have not told one person everything. I have not been completely open with anyone. I don't feel like I can. It has gotten to this place of such despair that it is easier not to talk about it. Yet, it is consuming me. It is bringing me down and keeping me in this dark place. I decided a long time ago I would always pick myself up. I promised myself I would never allow myself to go so far in to the dark I could not find my way out.
Anyone got a flashlight?
I recently had the privilege of speaking with someone who does energy work. This is something similar to therapy, but also very different. It is about centering the mind and body. It's about balancing the energy in your body so that the positive energies can flow. Granted, I am no expert so that is my very basic explanation. Either way, the opportunity brought to my attention some things I hadn't realized about myself while also bringing to light or validating that which I did know about myself. For some reason, however, by the end of the call I did not feel a sense of relief or calm, as many say they do. But it did bring to my attention what things I may need to focus on to help balance me out.
You see, my health has been in turmoil for some time now. Each time we (my family and I) feel like we gain some ground, it seems to knock something else off and the cycle starts again. Right now, the most concerning issue is my digestion or lack thereof. At this point, I am scheduled to see a specialist at Johns Hopkins in May. I have been evaluated in Dallas for a gastric stimulator. In the small town where I live, my primary care physician sold her practice to a nurse practitioner (not quite up to par for my situation), but has assured me that she is only semi-retired and will follow my case closely. In the meantime, I am living on protein shakes, eggs, toast, and bananas. I force down a semi-normal meal for lunch for the pure sake of feeling and tasting the food in my mouth. I also allow myself one Zevia a day (an all natural diet soda). All the while, I am still in pain on a daily basis, if not just plain nauseated. I have to force my deprived body to exercise just to help move food along and to help maintain an appetite for the limited amount of food I do get to eat.
In my dreams I eat really unhealthy, hearty meals like cheeseburgers with fries and a chocolate milkshake. I update my resume and apply for jobs as a psych nurse or a nutritionist. I go for bike rides with my son in the New Mexico sun. I make elaborate meals for my hard working husband. I shampoo my carpets. I give my dogs a bath. I do all these things with so much joy. Then, I wake up for a normal day, which should be joyful enough with the blessings I have. Instead it is tainted with pain, fear, anxiety, and desire for respite.
I tell myself everyday, "Remember before you were this sick, as a child, you would hate getting up everyday for school. You always felt tired and dreaded school. Until you got up and got moving. The days turned out fine. This is the same thing. It is just a new normal. Be grateful for the joys and blessings." That's my intellect talking. That's my logic and rational brain. That same brain told me yesterday, as yesterday was the epitome of awful belly-wise, "What is this doing to your son? He cannot come home from school and see you like this. Not often. He needs to know there is meaning and joy in the world. If he sees his mother, a role-model, defeated and accepting defeat on the sofa with no makeup and a mess of hair, he will think this is the norm. This will not be his norm. He will lead a happy life with purpose and be grateful. You have to instill that in him." Unfortunately, the physical and emotional toll has run too high.
I can put on a good show. I get around town independently for the most part. I have responsibilities I take care of and follow through on. I go to church. I take a shower, do my make-up, style my hair, and brush my teeth. I cannot wear fitted clothing because of the pressure it adds to my belly so my thin frame is usually in something casual, but I try to keep it nice and age appropriate. But inside I am feeling like an out casted middle schooler who hasn't had a real meal or a good night's sleep in years.
The gastric stimulator is a possibility and seems to be my most viable option for better quality of life, but it is ultimately up to the doctors and insurance company. When I read reports about other patients who got them, I was astonished by how close their stories were to my own. I was actually elated because many of them spoke of waking up from the procedure craving their favorite foods. It takes time for your system to be able to handle those foods, but within hours of the procedure relief is often felt. Needless to say, this made me a little anxious to get the process started.
I spoke with the doctor in Dallas today. I saw him three weeks ago. I called him last week because I had heard nothing, but he was still looking over things. I called him today. Surely a third week has given him time to look it over, consult, etc. When I saw him he said he generally turns people away for these stimulators, but that does not seem to be the case for me. He kept all my medical records and said he needed some time to comb through them, to be thorough because my case is very complicated given the multiple comorbidities. I appreciate and respect his time and attention to my delicate case. Most doctors panic at the thought of my chart.
After relaying to the woman on the phone that I was curious about the status of my appointment because he still has my copies of my medical records and it has been three weeks with no news whatsoever. She politely (she is very nice, as is the doctor) explained that "your case is a very complicated one..." that's where I started to tune out. When she was done I simply said, "After three weeks I am still in the same position, if not worse than when I saw him, I would just like to know if this is even going to be a possibility for me or should I just bank on Johns Hopkins?" She apologetically told me that he is still considering me a candidate and that's why he is still needing my information. He just wants to be sure he doesn't rock the boat with everything that is going on inside my body. She said she would let the doctor know I would like my records back (mostly because he has my allergy list and it is too long for me to remember, possibly leading to my increased pain) and that I was anxious. I asked her to just let him know I am anxious to enjoy life with my seven year old.
And so I have no choice but to wait. Intellectually, logically, rationally I know that this doctor is doing his absolute best to insure I get the best treatment. I know that Johns Hopkins is an amazing facility and the specialist I am scheduled to see has some amazing credentials. I know that I am on a path to respite. I know that I am a fighter or I would not have made it this far. I know that there is meaning and purpose to life. I know that I am blessed to have my son, husband, a roof over our heads, clothes, and some little luxuries. I know I am blessed to have my in-laws near to help at the drop of a hat. I know that God has a plan and is carrying me through these trying times. The truth is, I don't feel like myself anymore.
I feel lost. I feel desperate. I feel deprived. I feel guilty for the burden it adds to my family. I feel guilty I cannot be the mother, friend, wife, daughter, sister that I once was and strive to be. I feel angry- if I hear one more time how "complicated" my case is, I swear I will slap someone (completely out of character). I am also angry that things aren't moving along faster. Did I wait too long to complain enough for someone to realize I was serious? I feel saddened by the fact that this has consumed me. I thought I was above that for some reason. I thought I could conquer anything and nothing could hold me down. This, this APS Type II, these multiple auto-immunities, this daily torture of lack of food or painful ingestion/digestion of food, this daily grind, this regimen, this has consumed me.
I talk to my husband. I talk to my family members. I occasionally talk to a friend. You know, with every person there is something different you can share. With some you feel comfortable laying it all out there. With others it is more difficult to be open. I can honestly say I have not told one person everything. I have not been completely open with anyone. I don't feel like I can. It has gotten to this place of such despair that it is easier not to talk about it. Yet, it is consuming me. It is bringing me down and keeping me in this dark place. I decided a long time ago I would always pick myself up. I promised myself I would never allow myself to go so far in to the dark I could not find my way out.
Anyone got a flashlight?
Monday, February 4, 2013
A Little Kindness
I had my consultation appointment with the general surgeon for the J-Tube insertion we have been talking about. Let me just say that I am astonished. I have had auto-immune diseases since I was in middle school. I have seen countless doctors. I went to college for a health care profession and worked with a few doctors. I realize that doctors come from all different backgrounds and all go in to the profession for different reasons. Somewhere along the way, whether in school or during their career, doctors often allow their egos to take control of their patient care. I believe I am a clear picture of this in this particular situation.
I have at least 7 different health care providers following me currently. I have, for years now, asked that they communicate because I am no expert. I cannot always tell what symptom is a red flag or what disease it may be affecting. They all assure me they are/will work together. January 7th was the first day I heard about the J-Tube. By January 11th, I was told it was the "general consensus" to go ahead with the feeding tube to sustain me until I could make it to Johns Hopkins Medical Center in Baltimore in May. In my last post I mentioned how far away the consultation appointment seemed because the doctors who had spoken to me directly made this seem urgent. I believed them because I know I have been force feeding myself uncomfortably for a while now. I was just looking for respite.
Normally, I am an information junky. If I get a diagnosis or a new treatment plan, I usually rush home and research it until I can find no new information. This time I didn't. This time I was just too overwhelmed and frightened to know what would come of all of this. I decided instead to allow the doctors to do their job. My plan was to pray, focus on my family, and put one foot in front of the other until it got easier to look up. That's exactly what I did. Throughout the month, I suffered, but I prayed endlessly for God to guide the doctors to make the best choice for me. I prayed that God allow me to be open and accepting of the decisions the doctors make and remind me that the journey I am on is His plan.
January 29th rolls around and my nerves were at their highest. I didn't sleep soundly the night before. We walk into the appointment expecting to hear when surgery dates are set up, but we left blown away. The surgeon explained that the state my digestive system is in is not suitable for a feeding tube. It would be a temporary solution for a permanent problem that has the potential for making the current situation much worse. You see, a J-Tube is normally inserted for a short period of time for people who may have difficulty swallowing or an acute injury. My entire digestive tract is not working properly, so force feeding food directly into the intestine could damage it worse. In addition, my immune system is attacking my system so he explained that cutting a hole in an intact intestine could lead to countless complications, including needing the feeding tube permanently while constantly addressing the complications. That brings us to my gallbladder.
My primary care physician found calcifications on my gallbladder over a year ago. At the time she sent me to the current gastroenterologist. She has been insistent on getting it removed and thought with the feeding tube being inserted we could get it out at the same time. I agreed because I feel like I have no room in my abdomen for what is currently there anyway, so I am all for taking out anything that may help. The surgeon reiterated what the gastroenterologist said last year, he would not remove the gallbladder and submit my body to surgery due to fear of introducing infection. His suggestion was an electrical gastric stimulator.
This sent my head spinning. It was clear that these doctors had spent the last month hounding me with information about this feeding tube and the urgency for my blood sugars to get under control and my weight to go up all the while none of them actually communicating with each other or looking at the whole picture. If just one of them had spent a little more time looking into the benefits versus risks of the feeding tube, they would have stopped the process dead in its tracks. As I have looked further into this option of the feeding tube, I realize it was never a viable option for my situation to begin with. How did 7 doctors overlook a referral for such a drastic yet dangerous "solution" for someone who has been nothing but compliant and continually in distress?
With all of that, I looked at the surgeon and told him, "I don't know where to go from here. I have an appointment with Johns Hopkins in May, but what should I do for the next four months?" I was feeling too betrayed by my other doctors and overlooked to turn to them for more help. I was scared I may not make it the next four months with the little amount of food I have been taking in. The surgeon said his office would research the stimulator, find out who does the placement, and get us referred there. He explained it would need to be within driving distance for follow ups and calibrations so Johns Hopkins was not ideal for the management of the stimulator, but he certainly agreed I need to get to Johns Hopkins as soon as possible before my body declines even more.
So, with that information and money out of our pocket for a visit that was only more traumatizing than the 22 days that came before it, my husband and I walked out of the office. In the car I broke down. Not because I was disappointed I wasn't getting cut into, but because I had been pressured into this plan I was never really comfortable with to begin with only to find out it was more dangerous than what I am already going through. It was also another slap in the face by reality of the magnitude of my illnesses and the havoc they are wreaking throughout my body. By now it has been about a week and I have had some time to decompress.
I have done some minor research, but have made a decision. I have looked into the closer facilities that have the technology for the placement of the electrical stimulator. Luckily, there are a couple within driving distance and close to family members I would love to take advantage of, but I have to think of every possibility. At this point, I have an appointment with a hospital who is ranked #3 in gastroenterology as well as specializes in research of Schmidt Syndrome (which the surgeon openly said he had never even heard of). I feel that the best thing for myself and my family is to wait until I get to Johns Hopkins.
Let #3 and the immune specialists do their full work up. Let them come up with the best treatment plan. From there, I will ask them to delegate down to the closer locations. There are a million possibilities, but what I do know is that I have been to two major educational hospitals and still have no real answers. I am no longer willing to let doctors grasp for straws trying to solve this intricate puzzle. I will not be a trophy for a doctor to hoist on to their mantel at the end of their career. I will not be a pin cushion or guinea pig either. I will live my life to the fullest every day that I am given.
In the meantime, my gastroenterologist changed up some medications in hopes that we can at least sustain the weight I have now until I get to Johns Hopkins. I cannot tell you how many different times in the last few years, but certainly the last week, I have heard "Johns Hopkins is going to save your life." That's a hard pill to swallow. No one wants to hear that, but at the same time it gives me hope.
In light of all this turmoil, the donations have been rolling in. I am so grateful to all the people out there who have heard my story and want to help. Having the support of my husband and son in Maryland will make a world of difference. Not worrying about finances while trying to get the treatment I need is a gift I can never repay. But I think it is important to tell a story of an amazing little man that I believe God has put on this earth to teach us all a thing or two about life.
Last week my son received an invitation to a friend's birthday party. He and this little boy have been friends since headstart. They played soccer together and were in Taekwondo together. They also attend the same school. On the invitation it said, "Instead of gifts he would like for you to bring a monetary donation. He is going to donate the money received, to a special friend." This party was going to be held at a local pizza restaurant. Not only was I feeling exhausted from the month I had had, the week I had had, but the last several parties I have taken my son to I have gotten sick. My husband worked that night so I would certainly have to take this task on alone if need be.
I talked myself into it. My son thinks the world of this little boy. My son has been taken out of Taekwondo because of my health and has been house bound, other than school, the entire month of January. I needed to let him have this. I needed to let him be a kid and enjoy his friends. I needed to push my exhaustion aside and try (again) to make it through without falling ill after. Plus, I think the world of this little boy's family so I had to not let my health hold me back again. This is my thought process often, health can only hold me back so far.
We went to the birthday party. It was nice. I love the pure innocent joy of children. I love the brothers and sisters. I love their excitement. I love to see my son smile and laugh as if he has not a care in the world. And that's what he did. The birthday boy is so poised beyond his years, he stood on a chair at the end of present opening and thanked everyone for coming to celebrate his birthday. He also thanked everyone for the donations. I was just taken aback by him and his family and how the kindness seems to flow from them even in casual conversations.
As I was getting into our vehicle, helping my little man organize all the little goodies he had gotten at the party, someone rushes up behind me. I turn to see the birthday boy and his mom in the dark, cold parking lot. They handed me a box. The mom explained to me that it was the birthday boy's decision, but that he had really wanted to help his friend out. They had heard about our situation and the donations and wanted to help. I just about lost control of myself, but I did not want to scare the birthday boy with tears. I held my composure long enough to give him a BIG grateful hug and tell him how special he is. I thanked them, I don't even know how many times, before I finally got into my vehicle and drove home.
I got home and told my husband the story. We both broke down (in our own ways), but spent the next several hours- scratch that- the entire weekend talking about the amazing kindness and compassion this little seven year old holds. This little boy is wise beyond his years. He has a kindness in his heart and his eyes that is a true gift from God Himself. I believe we all have so much to learn from this precious little angel.
This past Sunday, I donated a portion of the money he donated us to my church. I always give an offering, but it is never much. This time, I felt it was important to pay it forward. Not just what this little boy had done for me, but for every single penny we have received from the pockets of others. We do not deserve this money. We have not worked for it. We have nothing in return to offer for it. But we need it and we asked. Kind and generous folks are hearing our story and offering a helping hand. Kindness is contagious. Support is healing. Love is never ending.
I may be facing the most difficult calling of my life, but there is a reason. I am being taught lessons everyday from unexpected places. We do not suffer in vain. If I do not come out of this on the other side on top, I will be a stepping stone or a mystery solver for the next sufferer. My daily life may be difficult beyond comprehension (even my own), but my life is being molded as we speak. I will come out of this so much wiser, hopefully more compassionate, and stronger than I ever thought possible.
And that one little boy opened my eyes to that more than I could have ever imagained before. Thank you!
I have at least 7 different health care providers following me currently. I have, for years now, asked that they communicate because I am no expert. I cannot always tell what symptom is a red flag or what disease it may be affecting. They all assure me they are/will work together. January 7th was the first day I heard about the J-Tube. By January 11th, I was told it was the "general consensus" to go ahead with the feeding tube to sustain me until I could make it to Johns Hopkins Medical Center in Baltimore in May. In my last post I mentioned how far away the consultation appointment seemed because the doctors who had spoken to me directly made this seem urgent. I believed them because I know I have been force feeding myself uncomfortably for a while now. I was just looking for respite.
Normally, I am an information junky. If I get a diagnosis or a new treatment plan, I usually rush home and research it until I can find no new information. This time I didn't. This time I was just too overwhelmed and frightened to know what would come of all of this. I decided instead to allow the doctors to do their job. My plan was to pray, focus on my family, and put one foot in front of the other until it got easier to look up. That's exactly what I did. Throughout the month, I suffered, but I prayed endlessly for God to guide the doctors to make the best choice for me. I prayed that God allow me to be open and accepting of the decisions the doctors make and remind me that the journey I am on is His plan.
January 29th rolls around and my nerves were at their highest. I didn't sleep soundly the night before. We walk into the appointment expecting to hear when surgery dates are set up, but we left blown away. The surgeon explained that the state my digestive system is in is not suitable for a feeding tube. It would be a temporary solution for a permanent problem that has the potential for making the current situation much worse. You see, a J-Tube is normally inserted for a short period of time for people who may have difficulty swallowing or an acute injury. My entire digestive tract is not working properly, so force feeding food directly into the intestine could damage it worse. In addition, my immune system is attacking my system so he explained that cutting a hole in an intact intestine could lead to countless complications, including needing the feeding tube permanently while constantly addressing the complications. That brings us to my gallbladder.
My primary care physician found calcifications on my gallbladder over a year ago. At the time she sent me to the current gastroenterologist. She has been insistent on getting it removed and thought with the feeding tube being inserted we could get it out at the same time. I agreed because I feel like I have no room in my abdomen for what is currently there anyway, so I am all for taking out anything that may help. The surgeon reiterated what the gastroenterologist said last year, he would not remove the gallbladder and submit my body to surgery due to fear of introducing infection. His suggestion was an electrical gastric stimulator.
This sent my head spinning. It was clear that these doctors had spent the last month hounding me with information about this feeding tube and the urgency for my blood sugars to get under control and my weight to go up all the while none of them actually communicating with each other or looking at the whole picture. If just one of them had spent a little more time looking into the benefits versus risks of the feeding tube, they would have stopped the process dead in its tracks. As I have looked further into this option of the feeding tube, I realize it was never a viable option for my situation to begin with. How did 7 doctors overlook a referral for such a drastic yet dangerous "solution" for someone who has been nothing but compliant and continually in distress?
With all of that, I looked at the surgeon and told him, "I don't know where to go from here. I have an appointment with Johns Hopkins in May, but what should I do for the next four months?" I was feeling too betrayed by my other doctors and overlooked to turn to them for more help. I was scared I may not make it the next four months with the little amount of food I have been taking in. The surgeon said his office would research the stimulator, find out who does the placement, and get us referred there. He explained it would need to be within driving distance for follow ups and calibrations so Johns Hopkins was not ideal for the management of the stimulator, but he certainly agreed I need to get to Johns Hopkins as soon as possible before my body declines even more.
So, with that information and money out of our pocket for a visit that was only more traumatizing than the 22 days that came before it, my husband and I walked out of the office. In the car I broke down. Not because I was disappointed I wasn't getting cut into, but because I had been pressured into this plan I was never really comfortable with to begin with only to find out it was more dangerous than what I am already going through. It was also another slap in the face by reality of the magnitude of my illnesses and the havoc they are wreaking throughout my body. By now it has been about a week and I have had some time to decompress.
I have done some minor research, but have made a decision. I have looked into the closer facilities that have the technology for the placement of the electrical stimulator. Luckily, there are a couple within driving distance and close to family members I would love to take advantage of, but I have to think of every possibility. At this point, I have an appointment with a hospital who is ranked #3 in gastroenterology as well as specializes in research of Schmidt Syndrome (which the surgeon openly said he had never even heard of). I feel that the best thing for myself and my family is to wait until I get to Johns Hopkins.
Let #3 and the immune specialists do their full work up. Let them come up with the best treatment plan. From there, I will ask them to delegate down to the closer locations. There are a million possibilities, but what I do know is that I have been to two major educational hospitals and still have no real answers. I am no longer willing to let doctors grasp for straws trying to solve this intricate puzzle. I will not be a trophy for a doctor to hoist on to their mantel at the end of their career. I will not be a pin cushion or guinea pig either. I will live my life to the fullest every day that I am given.
In the meantime, my gastroenterologist changed up some medications in hopes that we can at least sustain the weight I have now until I get to Johns Hopkins. I cannot tell you how many different times in the last few years, but certainly the last week, I have heard "Johns Hopkins is going to save your life." That's a hard pill to swallow. No one wants to hear that, but at the same time it gives me hope.
In light of all this turmoil, the donations have been rolling in. I am so grateful to all the people out there who have heard my story and want to help. Having the support of my husband and son in Maryland will make a world of difference. Not worrying about finances while trying to get the treatment I need is a gift I can never repay. But I think it is important to tell a story of an amazing little man that I believe God has put on this earth to teach us all a thing or two about life.
Last week my son received an invitation to a friend's birthday party. He and this little boy have been friends since headstart. They played soccer together and were in Taekwondo together. They also attend the same school. On the invitation it said, "Instead of gifts he would like for you to bring a monetary donation. He is going to donate the money received, to a special friend." This party was going to be held at a local pizza restaurant. Not only was I feeling exhausted from the month I had had, the week I had had, but the last several parties I have taken my son to I have gotten sick. My husband worked that night so I would certainly have to take this task on alone if need be.
I talked myself into it. My son thinks the world of this little boy. My son has been taken out of Taekwondo because of my health and has been house bound, other than school, the entire month of January. I needed to let him have this. I needed to let him be a kid and enjoy his friends. I needed to push my exhaustion aside and try (again) to make it through without falling ill after. Plus, I think the world of this little boy's family so I had to not let my health hold me back again. This is my thought process often, health can only hold me back so far.
We went to the birthday party. It was nice. I love the pure innocent joy of children. I love the brothers and sisters. I love their excitement. I love to see my son smile and laugh as if he has not a care in the world. And that's what he did. The birthday boy is so poised beyond his years, he stood on a chair at the end of present opening and thanked everyone for coming to celebrate his birthday. He also thanked everyone for the donations. I was just taken aback by him and his family and how the kindness seems to flow from them even in casual conversations.
As I was getting into our vehicle, helping my little man organize all the little goodies he had gotten at the party, someone rushes up behind me. I turn to see the birthday boy and his mom in the dark, cold parking lot. They handed me a box. The mom explained to me that it was the birthday boy's decision, but that he had really wanted to help his friend out. They had heard about our situation and the donations and wanted to help. I just about lost control of myself, but I did not want to scare the birthday boy with tears. I held my composure long enough to give him a BIG grateful hug and tell him how special he is. I thanked them, I don't even know how many times, before I finally got into my vehicle and drove home.
I got home and told my husband the story. We both broke down (in our own ways), but spent the next several hours- scratch that- the entire weekend talking about the amazing kindness and compassion this little seven year old holds. This little boy is wise beyond his years. He has a kindness in his heart and his eyes that is a true gift from God Himself. I believe we all have so much to learn from this precious little angel.
This past Sunday, I donated a portion of the money he donated us to my church. I always give an offering, but it is never much. This time, I felt it was important to pay it forward. Not just what this little boy had done for me, but for every single penny we have received from the pockets of others. We do not deserve this money. We have not worked for it. We have nothing in return to offer for it. But we need it and we asked. Kind and generous folks are hearing our story and offering a helping hand. Kindness is contagious. Support is healing. Love is never ending.
I may be facing the most difficult calling of my life, but there is a reason. I am being taught lessons everyday from unexpected places. We do not suffer in vain. If I do not come out of this on the other side on top, I will be a stepping stone or a mystery solver for the next sufferer. My daily life may be difficult beyond comprehension (even my own), but my life is being molded as we speak. I will come out of this so much wiser, hopefully more compassionate, and stronger than I ever thought possible.
And that one little boy opened my eyes to that more than I could have ever imagained before. Thank you!
Thursday, January 17, 2013
Next Stop: Johns Hopkins Medical Center
My biggest connection to the outside world (sadly) is Facebook. I only friend close friends and family members to keep things as private as possible. This blog has connected me to a more diverse group, but I absolutely enjoy it. I think it is important for me to update everyone because I have been vague on Facebook and in person relating to my most recent health issues. Not only that, there may be someone out there in search of answers or a connection going through something very similar to me. We cannot look at illness as a weakness and hide it from the world. We need to share our stories so that real change can happen for those who are suffering from complicated cases.
My last post I mentioned that it was suggested I get a "J Tube" inserted. This is a tube that goes into the small intestine, by-passing the stomach, to get nutrients directly in to the intestines. This comes as a result of continued weight loss even with treatment for gastroparesis. This weight loss has left me with very little subcutaneous fat to insert my insulin pump. Without that tissue, insulin is not absorbed properly. That in turn results in erratic and dangerous blood sugars. A domino effect we would like to stop as quickly as we can because it is starting to trickle down and exacerbate much of my other illnesses.
After much debate amongst myself, my doctors, family, and my nutritionist the conclusion has been made that it is necessary. My first consultation appointment with my surgeon will be January 29th. To my hungry body, that seems so far away. Also, at that time they plan to remove my gallbladder. About a year ago they found calcification in my gallbladder but opted against surgery at the time because I was too weak to withstand it, and they did not want to make me vulnerable to infection. Now, we can kill two birds with one stone. In my opinion, that's a gold medal.
For more than 7 years eating has been difficult. The last two years have been the absolute worst. It started with some bad bloating. Then came some sharp lower abdominal pain. (I won't get graphic but for sufferers it is important to note the following) My bowels changed in color, shape, consistency, frequency, you name it! Slowly over time I noticed I was feeling overly full frequently. As time passed the bloating, pain, and fullness became worse to the point of frequent Emergency Room visits with little answers. Finally a gastroenterologist came into the picture and began knocking down one brick at a time. At this point he has found pernicious anemia, gastroparesis, Celiac disease, abnormal cells in my colon and rectum (he is certain this is an inflammatory bowel disease but has no conclusive evidence as to the specific type yet), and calcifications on my gallbladder. Even with treating all of this in addition to treating the nerve dysfunction (which should help digestion) I continue to decline and symptoms are worsening. I cannot tell you how badly I want to eat an "allergen free" brownie right now that has been in my cupboard for days just screaming my name and yet my gut is telling me it is impossible. I equate that to torture (excuse my dramatics).
The "J Tube" happens to be a temporary plan. Once the debate amongst professionals commenced, it was strongly suggested (for the umpteenth time in the past 5 years) that I seek answers and help at Johns Hopkins University. Luckily for me, considering my symptoms, no doctor referral was needed and they quickly scheduled me for an appointment May 22. So, for the four months while we wait and hope for answers and relief I will use the "J Tube" as a supplemental way to add calories and nutrients to my diet. My local doctors (NM) are leaving it up to Johns Hopkins to take it from here. They have all thrown in the towel, admitting my case is too complicated and sensitive. They will follow me closely and hope to pick up where Johns Hopkins leaves off.
That adds a whole new can of worms to the mix. As if finances were not already a worry for the majority of Americans, we are not immune. With my health issues we certainly have to budget tightly and sacrifice many luxuries. We make ends meet, but with this most recent news we know we are in over our heads. My life has no price tag. I am a daughter, a sister, a wife, a mother, a daughter-in-law, an aunt, and a friend. I will not let this conquer me without a fight. I will not let this conquer me. I will not let this take precious time away from my son. With the support of great family members and offers by great friends, there has been a benefit account set up for me to help my husband and I with medical and travel expenses we are sure to incur over the next several months. I will admit it is a desperate plea, but all pride is lost in times of desperation.
My family members have also set up a blog site themselves. We know the coming months will be trying, but I do not want to keep people wondering. The sight is set up for my benefit/ donation account. The blog will be updated as information rolls in due to the fact that I may be too tired, weak, or out of touch to update my own blog. Please visit this sight for more information http://helplaurenheredia.
I have hope that this will be a new chapter in my life. I know more life changes are to come, but I have high hopes they will all be for the better. I wish to improve the quality of life for my son, my husband, my family, and of course myself!
I am a fighter.
My last post I mentioned that it was suggested I get a "J Tube" inserted. This is a tube that goes into the small intestine, by-passing the stomach, to get nutrients directly in to the intestines. This comes as a result of continued weight loss even with treatment for gastroparesis. This weight loss has left me with very little subcutaneous fat to insert my insulin pump. Without that tissue, insulin is not absorbed properly. That in turn results in erratic and dangerous blood sugars. A domino effect we would like to stop as quickly as we can because it is starting to trickle down and exacerbate much of my other illnesses.
After much debate amongst myself, my doctors, family, and my nutritionist the conclusion has been made that it is necessary. My first consultation appointment with my surgeon will be January 29th. To my hungry body, that seems so far away. Also, at that time they plan to remove my gallbladder. About a year ago they found calcification in my gallbladder but opted against surgery at the time because I was too weak to withstand it, and they did not want to make me vulnerable to infection. Now, we can kill two birds with one stone. In my opinion, that's a gold medal.
For more than 7 years eating has been difficult. The last two years have been the absolute worst. It started with some bad bloating. Then came some sharp lower abdominal pain. (I won't get graphic but for sufferers it is important to note the following) My bowels changed in color, shape, consistency, frequency, you name it! Slowly over time I noticed I was feeling overly full frequently. As time passed the bloating, pain, and fullness became worse to the point of frequent Emergency Room visits with little answers. Finally a gastroenterologist came into the picture and began knocking down one brick at a time. At this point he has found pernicious anemia, gastroparesis, Celiac disease, abnormal cells in my colon and rectum (he is certain this is an inflammatory bowel disease but has no conclusive evidence as to the specific type yet), and calcifications on my gallbladder. Even with treating all of this in addition to treating the nerve dysfunction (which should help digestion) I continue to decline and symptoms are worsening. I cannot tell you how badly I want to eat an "allergen free" brownie right now that has been in my cupboard for days just screaming my name and yet my gut is telling me it is impossible. I equate that to torture (excuse my dramatics).
The "J Tube" happens to be a temporary plan. Once the debate amongst professionals commenced, it was strongly suggested (for the umpteenth time in the past 5 years) that I seek answers and help at Johns Hopkins University. Luckily for me, considering my symptoms, no doctor referral was needed and they quickly scheduled me for an appointment May 22. So, for the four months while we wait and hope for answers and relief I will use the "J Tube" as a supplemental way to add calories and nutrients to my diet. My local doctors (NM) are leaving it up to Johns Hopkins to take it from here. They have all thrown in the towel, admitting my case is too complicated and sensitive. They will follow me closely and hope to pick up where Johns Hopkins leaves off.
That adds a whole new can of worms to the mix. As if finances were not already a worry for the majority of Americans, we are not immune. With my health issues we certainly have to budget tightly and sacrifice many luxuries. We make ends meet, but with this most recent news we know we are in over our heads. My life has no price tag. I am a daughter, a sister, a wife, a mother, a daughter-in-law, an aunt, and a friend. I will not let this conquer me without a fight. I will not let this conquer me. I will not let this take precious time away from my son. With the support of great family members and offers by great friends, there has been a benefit account set up for me to help my husband and I with medical and travel expenses we are sure to incur over the next several months. I will admit it is a desperate plea, but all pride is lost in times of desperation.
My family members have also set up a blog site themselves. We know the coming months will be trying, but I do not want to keep people wondering. The sight is set up for my benefit/ donation account. The blog will be updated as information rolls in due to the fact that I may be too tired, weak, or out of touch to update my own blog. Please visit this sight for more information http://helplaurenheredia.
I have hope that this will be a new chapter in my life. I know more life changes are to come, but I have high hopes they will all be for the better. I wish to improve the quality of life for my son, my husband, my family, and of course myself!
I am a fighter.
Monday, January 7, 2013
You're So Sweet
The last few months (who am I kidding, years) have been rough. The snowball only seems to be growing bigger, and I seem to be getting smaller and weaker trying to hold it back. Recently, I have had some set backs, partly dealing with life and partly dealing with my illnesses. I have openly blogged about the "life" issues so I should quickly fill you in on the health side of things.
In October I began seeing a new neurologist because I continue to have unexplainable symptoms my other specialists, mainly my rheumatologist and endocrinologist, wanted to look in to. My primary referred me to someone who is fairly close and highly recommended so I jumped at the opportunity. My prior neurologist rarely did any type of examination, based everything solely on what I told him, and his answer to everything was increasing my anti-convulsant medications. I have to admit I was terrified to see a new doctor.
With every new doctor it is like a blind date. Will this person be compassionate? Will this person be a good listener? Will this person have a big ego? Will this person take into account the whole picture? What tests will this person want to run? Is this person the right choice? I went in with my husband, an open mind, and mentally prepared for anything and everything I have been through in the past. To my surprise, this neurologist is unlike any other I had seen in the past. He went through my entire medical history (I brought a file cabinet's worth). He listened to not only myself but my husband as well. He examined me. Then came his thoughts.
It seems to be a dysfunction of the autonomic nervous system. He said he did not have the technology to test for the actual disorder, but they have the technology at the Mayo Clinic if that is something we want to look into for the future. For the time being, he gave me a pamphlet on fibromyalgia. He told me in reading the information, I would probably find myself thinking, "It's like I am reading a book written about me". Then he began talking treatment. At that point I stopped him.
In the past I had been complaining of the symptoms to a primary care physician. At the time, she nearly jumped with excitement and said, "I have something that will fix that" and she quickly scribbled a prescription for Lyrica. I began taking it. I felt agitated. I felt swollen all over. I felt weighed down.........But it helped with the symptoms. I remember an aunt asking why they hadn't tested for fibromyalgia, but I was disgusted by the idea. In my head fibromyalgia was an excuse diagnosis for lazy people who wanted to complain about phantom pain. I was numb, tingling, and achy all over. Sometimes my feet would feel like they were on fire and all I could do was rub them back and forth over the carpet gently to get some relief. I would have sleep disturbances. It just didn't seem to fit what I thought of fibromyalgia. Plus, even though the Lyrica was helping the burning in my feet it was adding to all the other symptoms. I thought Lyrica was THE treatment for fibromyalgia.
He explained in a little more detail what his thoughts were, and again mentioned the Mayo Clinic for further testing if we wished to do so. He then calmed me down by starting me on a low dose of an actual nerve pain medication. He told me to report back to him and we could slowly go up in dose if necessary and if it helped. I left the office feeling a little hopeful in that this guy seemed to have a plan, compassion, and thought outside the box. I also left feeling like a fool who had just been played being told I was getting treated for fibromyalgia (a made up disease). I felt like a hypochondriac (because of my own ignorance, I know that now). Then I started reading the pamphlet and he was right.
It read me like a book. It talked about the numbness and tingling. It talked about the burning sensation sometimes combined with a cooling sensation. It talked about sleep disturbances. It went into how it affects your digestive system and your bladder function. Then it went into the biology behind it all, and it made even more sense to me. Once, we got home I looked up the disorder he was talking about that the Mayo Clinic had technology to diagnose. I realized why he hadn't just written me a referral to the Mayo Clinic then.
Autonomic Nervous System Disorder (ANSD), also called dysautonomia, is quite similar to fibrolmyalgia. It is a dysfunction of the nervous system that can trick the brain. The major difference in the two disorders is that ANSD actually causes nerve damage whereas fibromyalgia has no record or research showing progression or nerve damage, just dysfunction. Here's the clinger (and why an instant referral had not been written) the only way to treat ANSD is pain management along with treating the underlying cause (if the doctor can pinpoint it). Pain management for ANSD is the same as fibromyalgia treatment. So, no rush because the outcome will be the same for the moment. I am sure in time, if he truly becomes concerned with damage being caused he will push a little more for me to go to the Mayo Clinic. His exact words as we left his office were, "We don't want to do too much at once. One foot in front of the other and we will slowly break down the wall." I like that thinking.
That has been a lot to take in. I actually haven't even talked much about it to anybody or even explained it in detail. My belly is constantly giving me trouble and last week I ended up with a stomach flu (shortly after just having strep). Then, my blood sugar starts going crazy. To keep this post as minimal as possible, I went through three infusion sets for my insulin pump in one day. Problem being, the catheter is getting kinked. I do not have enough fatty tissue for the 6mm catheter to go in to. The manufacturer of my pump recommended I contact my health care professional to talk about alternatives. Luckily, I had an appointment with my Diabetic Educator/ Nutritionist today.
I go into the appointment prepared with my log book in hand and running through everything that has gone on since I have seen her so that we can put all the pieces of the puzzle together. Her suggestion and we literally came down to our "all else fails" plan, a j-tube aka feeding tube. Due to all my illnesses, take into account my medication and the medication schedule, along with my ability to take in food- the amount as well as how often, my weight diminishing leaving me no place to put my insulin pump, and the precise amounts of insulin I need (I am seriously sensitive to it) we need to think about by-passing my stomach and putting nutrition straight into my small intestine.
Let's not get too dramatic here. This is not a permanent feeding tube (as far as I know, I haven't looked into it and the appointment was just a few hours ago). This is a port, essentially, that will allow me to have my normal 3 meals a day, but this port will also allow me to supplement my food intake between meals without affecting my medications or other treatments. Also, on days when I am not able to take in any food, this will allow me to get nutrition without torturing myself by forcing food into an already uncomfortable belly. Her goal is to add weight which will give me strength and energy and a place to put my pump without the fear of not absorbing the insulin.
So, WOW, right?! But my attitude remains positive for many reasons. One, God has me in his hands. Two, my beautiful son. Three, a comment someone made to me yesterday. The heart of this whole blog.
There is a man around our small town who is smiley and friendly. You can tell he is a little off though. I worked part time at a bank when I was first put on disability. He would frequent the bank. He is always very nice. He tries to be charming, but I do have to say it comes off a little creepy. You can tell he means well though. Recently, I started noticing him going to my church. Yesterday he greeted me as I came in. He offered me a piece of candy which I politely declined. He insisted but I explained I could not have candy. His follow up question, of course, was if I was diabetic. I confirmed. He then leaned in and said, "You know why you're diabetic?" I waited. He said, "because you're so sweet." I told him thank you and quickly sat down thinking how uncomfortable that encounter was. As the church service went on it began to hit me. He is right. I am diabetic because I am so sweet, and that is something to be proud of.
I face all these struggles every single day. Mine are mostly health struggles. But I would not have been given this life if it weren't meant to be. God knows I can handle this. God gave me gifts that I may not see through the struggles but He is showing me that He believes in me. I see that if I were not sick I would still be this Type A over-achiever. I bet I would be hard to handle (as if I am not now). My ego would be enormous and I would look down at all the "average" people in disgust as if I were something great. I would not be the mother or the wife I have become. I would not be as compassionate. I would be more bitter and less forgiving. I would not be who I am today. So, he was right.
I am so sweet!
-keep in mind I am no expert and have not fully researched the new information my doctors have given me so it may not all be accurate. Please, see your doctor for more accurate information.
In October I began seeing a new neurologist because I continue to have unexplainable symptoms my other specialists, mainly my rheumatologist and endocrinologist, wanted to look in to. My primary referred me to someone who is fairly close and highly recommended so I jumped at the opportunity. My prior neurologist rarely did any type of examination, based everything solely on what I told him, and his answer to everything was increasing my anti-convulsant medications. I have to admit I was terrified to see a new doctor.
With every new doctor it is like a blind date. Will this person be compassionate? Will this person be a good listener? Will this person have a big ego? Will this person take into account the whole picture? What tests will this person want to run? Is this person the right choice? I went in with my husband, an open mind, and mentally prepared for anything and everything I have been through in the past. To my surprise, this neurologist is unlike any other I had seen in the past. He went through my entire medical history (I brought a file cabinet's worth). He listened to not only myself but my husband as well. He examined me. Then came his thoughts.
It seems to be a dysfunction of the autonomic nervous system. He said he did not have the technology to test for the actual disorder, but they have the technology at the Mayo Clinic if that is something we want to look into for the future. For the time being, he gave me a pamphlet on fibromyalgia. He told me in reading the information, I would probably find myself thinking, "It's like I am reading a book written about me". Then he began talking treatment. At that point I stopped him.
In the past I had been complaining of the symptoms to a primary care physician. At the time, she nearly jumped with excitement and said, "I have something that will fix that" and she quickly scribbled a prescription for Lyrica. I began taking it. I felt agitated. I felt swollen all over. I felt weighed down.........But it helped with the symptoms. I remember an aunt asking why they hadn't tested for fibromyalgia, but I was disgusted by the idea. In my head fibromyalgia was an excuse diagnosis for lazy people who wanted to complain about phantom pain. I was numb, tingling, and achy all over. Sometimes my feet would feel like they were on fire and all I could do was rub them back and forth over the carpet gently to get some relief. I would have sleep disturbances. It just didn't seem to fit what I thought of fibromyalgia. Plus, even though the Lyrica was helping the burning in my feet it was adding to all the other symptoms. I thought Lyrica was THE treatment for fibromyalgia.
He explained in a little more detail what his thoughts were, and again mentioned the Mayo Clinic for further testing if we wished to do so. He then calmed me down by starting me on a low dose of an actual nerve pain medication. He told me to report back to him and we could slowly go up in dose if necessary and if it helped. I left the office feeling a little hopeful in that this guy seemed to have a plan, compassion, and thought outside the box. I also left feeling like a fool who had just been played being told I was getting treated for fibromyalgia (a made up disease). I felt like a hypochondriac (because of my own ignorance, I know that now). Then I started reading the pamphlet and he was right.
It read me like a book. It talked about the numbness and tingling. It talked about the burning sensation sometimes combined with a cooling sensation. It talked about sleep disturbances. It went into how it affects your digestive system and your bladder function. Then it went into the biology behind it all, and it made even more sense to me. Once, we got home I looked up the disorder he was talking about that the Mayo Clinic had technology to diagnose. I realized why he hadn't just written me a referral to the Mayo Clinic then.
Autonomic Nervous System Disorder (ANSD), also called dysautonomia, is quite similar to fibrolmyalgia. It is a dysfunction of the nervous system that can trick the brain. The major difference in the two disorders is that ANSD actually causes nerve damage whereas fibromyalgia has no record or research showing progression or nerve damage, just dysfunction. Here's the clinger (and why an instant referral had not been written) the only way to treat ANSD is pain management along with treating the underlying cause (if the doctor can pinpoint it). Pain management for ANSD is the same as fibromyalgia treatment. So, no rush because the outcome will be the same for the moment. I am sure in time, if he truly becomes concerned with damage being caused he will push a little more for me to go to the Mayo Clinic. His exact words as we left his office were, "We don't want to do too much at once. One foot in front of the other and we will slowly break down the wall." I like that thinking.
That has been a lot to take in. I actually haven't even talked much about it to anybody or even explained it in detail. My belly is constantly giving me trouble and last week I ended up with a stomach flu (shortly after just having strep). Then, my blood sugar starts going crazy. To keep this post as minimal as possible, I went through three infusion sets for my insulin pump in one day. Problem being, the catheter is getting kinked. I do not have enough fatty tissue for the 6mm catheter to go in to. The manufacturer of my pump recommended I contact my health care professional to talk about alternatives. Luckily, I had an appointment with my Diabetic Educator/ Nutritionist today.
I go into the appointment prepared with my log book in hand and running through everything that has gone on since I have seen her so that we can put all the pieces of the puzzle together. Her suggestion and we literally came down to our "all else fails" plan, a j-tube aka feeding tube. Due to all my illnesses, take into account my medication and the medication schedule, along with my ability to take in food- the amount as well as how often, my weight diminishing leaving me no place to put my insulin pump, and the precise amounts of insulin I need (I am seriously sensitive to it) we need to think about by-passing my stomach and putting nutrition straight into my small intestine.
Let's not get too dramatic here. This is not a permanent feeding tube (as far as I know, I haven't looked into it and the appointment was just a few hours ago). This is a port, essentially, that will allow me to have my normal 3 meals a day, but this port will also allow me to supplement my food intake between meals without affecting my medications or other treatments. Also, on days when I am not able to take in any food, this will allow me to get nutrition without torturing myself by forcing food into an already uncomfortable belly. Her goal is to add weight which will give me strength and energy and a place to put my pump without the fear of not absorbing the insulin.
So, WOW, right?! But my attitude remains positive for many reasons. One, God has me in his hands. Two, my beautiful son. Three, a comment someone made to me yesterday. The heart of this whole blog.
There is a man around our small town who is smiley and friendly. You can tell he is a little off though. I worked part time at a bank when I was first put on disability. He would frequent the bank. He is always very nice. He tries to be charming, but I do have to say it comes off a little creepy. You can tell he means well though. Recently, I started noticing him going to my church. Yesterday he greeted me as I came in. He offered me a piece of candy which I politely declined. He insisted but I explained I could not have candy. His follow up question, of course, was if I was diabetic. I confirmed. He then leaned in and said, "You know why you're diabetic?" I waited. He said, "because you're so sweet." I told him thank you and quickly sat down thinking how uncomfortable that encounter was. As the church service went on it began to hit me. He is right. I am diabetic because I am so sweet, and that is something to be proud of.
I face all these struggles every single day. Mine are mostly health struggles. But I would not have been given this life if it weren't meant to be. God knows I can handle this. God gave me gifts that I may not see through the struggles but He is showing me that He believes in me. I see that if I were not sick I would still be this Type A over-achiever. I bet I would be hard to handle (as if I am not now). My ego would be enormous and I would look down at all the "average" people in disgust as if I were something great. I would not be the mother or the wife I have become. I would not be as compassionate. I would be more bitter and less forgiving. I would not be who I am today. So, he was right.
I am so sweet!
-keep in mind I am no expert and have not fully researched the new information my doctors have given me so it may not all be accurate. Please, see your doctor for more accurate information.
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