Last Thursday, we celebrated Thanksgiving. A day to forget our countries actual history, eat a lot of food, hang out with family or friends, and go shopping. This year, I went to my roommates family's Thanksgiving. I have gone to their house for the holiday twice before and it is always a great time.
You know that game at Thanksgiving, where you go around the table and each person says what they are thankful for? I kind of hate that game. It is too much pressure. Today's blog is in place of that game.
The end of September this year, my life fell apart. The person I was in a relationship with ended things out of nowhere. I had break my lease, leave my job early, and move back to California. The last two months have been rough, to say the least.
During September and October, I had a lot of emotional support in Phoenix. I am so thankful to all of those people. Shout out to my program manager RH, my roommate LD, and my coworker K2. You were all there for me when I needed you. Thank you.
KH - I have known you for about nine or ten years now. We have both been through good times and bad. You have always a person of compassion and love. You love everyone in your life with all your heart. I am so glad that you have found your tribe. You have been my text therapist on more than one occasion and I am so thankful that you take the time to answer me. Your hands are often full, but you always manage to make time for friends. And even if we do not agree on things spiritual, I always appreciate the sentiment and care that you offer me through your religion. I cannot think of anyone in this world that I have met with a bigger heart than you. Even while you were in pain, emotionally and physically, in September and October you were still there for me. I hope you know that you can come to me about anything. I will always be an open ear and heart for you. Those two babies, N & P, of yours are so lucky to have you as their mom. I love you.
CB - I cannot express my gratitude to you. You let me move back into this house after leaving you for a boy. How could I do that? I am so glad that we met 3 (I think) years ago through that "other girl." Our friendship means so much to me. I missed you everyday that I was gone in Phoenix. I am so sorry for leaving in the first place. I know now that it was a mistake, but you have not judge me (at least not out loud) for the choice I made. You and your family welcomes me with open arms and I could not ask for a better second family. The B's are such a warm family that is also hilarious, loud, and crazy. There is never a dull moment at your parents house. We have been roommates in two different places and I could never ask for someone better to share a home with. It has been a pleasure getting to know you the last few years and I look forward to many more! Don't worry, you can kick me out when you get married. I won't stay forever like I said. CB, you are going to accomplish so much in life even if takes you a little longer than you'd like. Your dreams are there, you just have to grab them. Plus you are funny as shit, duh. I love you.
JBS - Yup, you get all three of your initials because I have known you that long! Remember high school history class and grad night? And going to McDonald's for Happy Meals then going through the car wash? Oh my gosh and that birthday at your mom's old house where were threw candy everywhere? Remember your mom, you, and I driving you back to the city once and meeting The Boy for the first time? So many memories with you. We don't see each other that often, but I always know that you are there for me. Like KH, you have always been a bit of a therapist for me when I needed it. Always level headed and easy to talk to. We also have fun, especially shopping or watching movies. Remember that giant monster movie?? It is also fun when The Boy and I gang up on you! Yes, that will continue to happen even now that you've been married for two years. On that subject, I am so glad you found someone so perfect for you. I enjoyed being a part of your special day and always enjoy his company. Still can't believe you are sometimes, though. Anyway, thank you for being my friend all of these years. Thank you for your future offer. It really means the world to me and I don't know how to express my gratitude. I love you.
(Yes, I cried while writing this blog.)
Thursday, November 30, 2017
Wednesday, November 29, 2017
EMR
EMR, for those of you who don't have a chronic illness or visit medical professionals on a regular basis. This means Electronic Medical Records. My medical journey did not begin recently and this is not the end either. Here is my medical story, so far...
In January 2015, my friend CB took me to the emergency room in Clovis because I had a weird stomach thing that wouldn't go away. They prescribed me some high amount of antacid and it eventually went away. That is not the main story. My blood pressure was through the roof while I was there. Something like 230 over 110 or something, which is way too high for someone my age and build. I had actually lost some weight and had been going to the gym for about a year at this time. The nurse and the doctor in the ER told me to get it checked ASAP. I eventually did, probably in March.
The doctor I went to was not in a nice part of town and only accepted Medical. She also did not speak English very clearly, which was frustrating. Mind you, I do not have anything against the low income population or foreigners but this was not the ideal situation when you have a medical problem. She prescribed me a few different blood pressure medications until we found one that worked.
After switching jobs, I got new insurance and found a new doctor. I like this doctor at first, although her front office staff was laughable. The doctor seemed competent and well educated, but still did not speak the most clear English. She wanted to find the cause of my high blood pressure, of course so did I. She ordered tests. I had blood work, an ultrasound, and an echo cardiogram to check my heart. Eventually she came back with information. She said, "Your kidneys appear to not be functioning correctly." While she is telling me this, I burst into tears because I know enough medical information to know that is BAD. This doctor has the nerve to say, "Don't worry, it is not a big deal." Boy, she was dead wrong. How does a doctor have the nerve to say that when they are not a nephrologist (kidney/renal specialist?) This was St. Patrick's Day 2016 and I was currently dating Boy #2. After this doctor appointment, I went to his house and cried a little. He was supportive and comforting, which made me feel much better. We will discuss him later.
I was then referred to Fresno Nephrology Group, thank goodness. I was looking for answers and incredibly stressed about everything. The new doctor was great. Full of information and did not speak to me like an idiot or child. He confirmed that I did in fact have Chronic Kidney Disease. He added Vitamin D to my regimen and a second blood pressure medication for swelling. This doctor said I would need a new kidney in 3-5 years, since everything looked stable.
Things slowly declined in my kidney function from then on. I have now had three nephrologists. One in Fresno, who is again my specialist, and two in Phoenix. The first one I saw in Phoenix was awful! The second one I found has been my favorite doctor ever! If you live in the Phoenix Metro Area and need a kidney specialist, find Andrew Cortez with Arizona Kidney Disease and Hypertension Center. He is absolutely amazing. While in Arizona, I also had a vascular surgeon for an AV Fistula was also great...but more on that subject on a different day.
So, I am currently at 17% kidney function with high potassium and high creatinine. Your kidneys work as a filter for your body. Mine are not filtering out all of the crap. As the function declines, I feel more tired and kind of weak. My skin has also taken a bit of hit. I now take two different blood pressure medications, sodium bicarbonate (baking soda), birth control, and vitamin d. This is not a lot of medication compared to other people with Chronic Kidney Disease. The disease usually comes hand in hand with something else like Lupus or Diabetes, but I am fortunate to be healthy other than my malfunctioning kidneys.
While in Arizona, I had almost complete my transplant evaluation with Banner Health. At the end of September, personal things came up and I could not stay in Arizona. It was a better decision to move back to California with friends and family. I lost all progress I had made with that transplant team. Fortunately, I have been referred to University of California San Francisco Transplant Center. Which I hear fabulous things about.
Last Friday, the day after Thanksgiving I received a letter from UCSF stating that I had officially been added to the transplant list on November 20th, 2017. Thank goodness. I was so grateful when I read the letter. I almost cried.
Now for the best part. Waiting. Just kidding, I hate waiting. I am not a very patient person. I never have been and don't think I ever will be. I now wait for the transplant center to call for more testing. Then my possible donor has to complete the same testing. Thank you MHY for your offer and for everything.
My medical journey will never end. There is not a cure for Chronic Kidney Disease. A transplant or dialysis (God forbid) are just treatments for longer life. The average donated kidney lasts 15 years. After receiving, a kidney you must stay on immunosuppressive drugs to avoid rejection for the rest of your life. These drugs save your life, but they have horrible side effects. I am hoping to be lucky and not endure any of those side effects like weight gain, cystic acne, or hair growth.
I do not know the future and that is a daily struggle for me. It is the great unknown and it terrifies me.
In January 2015, my friend CB took me to the emergency room in Clovis because I had a weird stomach thing that wouldn't go away. They prescribed me some high amount of antacid and it eventually went away. That is not the main story. My blood pressure was through the roof while I was there. Something like 230 over 110 or something, which is way too high for someone my age and build. I had actually lost some weight and had been going to the gym for about a year at this time. The nurse and the doctor in the ER told me to get it checked ASAP. I eventually did, probably in March.
The doctor I went to was not in a nice part of town and only accepted Medical. She also did not speak English very clearly, which was frustrating. Mind you, I do not have anything against the low income population or foreigners but this was not the ideal situation when you have a medical problem. She prescribed me a few different blood pressure medications until we found one that worked.
After switching jobs, I got new insurance and found a new doctor. I like this doctor at first, although her front office staff was laughable. The doctor seemed competent and well educated, but still did not speak the most clear English. She wanted to find the cause of my high blood pressure, of course so did I. She ordered tests. I had blood work, an ultrasound, and an echo cardiogram to check my heart. Eventually she came back with information. She said, "Your kidneys appear to not be functioning correctly." While she is telling me this, I burst into tears because I know enough medical information to know that is BAD. This doctor has the nerve to say, "Don't worry, it is not a big deal." Boy, she was dead wrong. How does a doctor have the nerve to say that when they are not a nephrologist (kidney/renal specialist?) This was St. Patrick's Day 2016 and I was currently dating Boy #2. After this doctor appointment, I went to his house and cried a little. He was supportive and comforting, which made me feel much better. We will discuss him later.
I was then referred to Fresno Nephrology Group, thank goodness. I was looking for answers and incredibly stressed about everything. The new doctor was great. Full of information and did not speak to me like an idiot or child. He confirmed that I did in fact have Chronic Kidney Disease. He added Vitamin D to my regimen and a second blood pressure medication for swelling. This doctor said I would need a new kidney in 3-5 years, since everything looked stable.
Things slowly declined in my kidney function from then on. I have now had three nephrologists. One in Fresno, who is again my specialist, and two in Phoenix. The first one I saw in Phoenix was awful! The second one I found has been my favorite doctor ever! If you live in the Phoenix Metro Area and need a kidney specialist, find Andrew Cortez with Arizona Kidney Disease and Hypertension Center. He is absolutely amazing. While in Arizona, I also had a vascular surgeon for an AV Fistula was also great...but more on that subject on a different day.
So, I am currently at 17% kidney function with high potassium and high creatinine. Your kidneys work as a filter for your body. Mine are not filtering out all of the crap. As the function declines, I feel more tired and kind of weak. My skin has also taken a bit of hit. I now take two different blood pressure medications, sodium bicarbonate (baking soda), birth control, and vitamin d. This is not a lot of medication compared to other people with Chronic Kidney Disease. The disease usually comes hand in hand with something else like Lupus or Diabetes, but I am fortunate to be healthy other than my malfunctioning kidneys.
While in Arizona, I had almost complete my transplant evaluation with Banner Health. At the end of September, personal things came up and I could not stay in Arizona. It was a better decision to move back to California with friends and family. I lost all progress I had made with that transplant team. Fortunately, I have been referred to University of California San Francisco Transplant Center. Which I hear fabulous things about.
Last Friday, the day after Thanksgiving I received a letter from UCSF stating that I had officially been added to the transplant list on November 20th, 2017. Thank goodness. I was so grateful when I read the letter. I almost cried.
Now for the best part. Waiting. Just kidding, I hate waiting. I am not a very patient person. I never have been and don't think I ever will be. I now wait for the transplant center to call for more testing. Then my possible donor has to complete the same testing. Thank you MHY for your offer and for everything.
My medical journey will never end. There is not a cure for Chronic Kidney Disease. A transplant or dialysis (God forbid) are just treatments for longer life. The average donated kidney lasts 15 years. After receiving, a kidney you must stay on immunosuppressive drugs to avoid rejection for the rest of your life. These drugs save your life, but they have horrible side effects. I am hoping to be lucky and not endure any of those side effects like weight gain, cystic acne, or hair growth.
I do not know the future and that is a daily struggle for me. It is the great unknown and it terrifies me.
Tuesday, November 28, 2017
My Life So Far
I grew up in Northern California. Typical kid, nothing too exciting happened in my life. But everything always seemed a bit more difficult for me than other kids...emotionally. I was very self conscious and often jealous of others. This is still true to some extent. I am mostly jealous now of happy people who lead easy lives. But you never know what is really happening in someone else's world. So...don't judge a book by it's cover.
My elementary, junior high, and high school years were filled with friends, mediocre grades, and band. I was never great at school, not sure why. I would love going to school, but the education portion...ya know, the important part, was never my focus. I wanted to hang out with my friends and drink soda with chips during lunch. My mom pushed me to join band and I enjoyed it from middle school until senior year. Again, I was not very good at it like studying. It got me through high school though. I loved going to practice and being a part of something special. I will always remember my high school band teacher, Mitch Bahr, for being one of the most passionate teachers I ever had. Aside from being a great influence in the classroom, he always helped students in his office during lunch or breaks. He is an example of what a teacher should be.
Later, I went to college because that is what you are "supposed" to do. It took me five years, not surprising. My major was art history because I found it interesting and I thought it would be easy to get some fabulous job in San Francisco after I graduated. Wrong. You need a PhD to get almost any job in a museum, unless you want to work in a gift shop for $10 an hour or volunteer for free. I struggled, then and now, with a plan for my life. I went back to an old job, then upgraded to the local optometrist office. This ended being a horrible decision. The job was fun and interesting, most of the time, but the doctor was a self righteous prick that tired to push religion on me during a review.
A week for two after I walked out on that job, I was accepted into AmeriCorps VISTA. I would serve as School Buddies Coordinator for an elementary school in Anacortes, WA. What an adventure?! I eventually served as an AmeriCorps VISTA for three different terms in three states, but not consecutively. I took a break between year two and three to work at a horrible construction company and my favorite job at a local irrigation company.
My first year in Washington was amazing. I found my passion in life was to work with young children. I wanted to help them, so they could achieve whatever they wanted to in life. My goal as a VISTA in that particular position was to match "troubled" students with community members that mentored them once or twice a week. The students loved their alone time with this new role model. Most of the students had issues at home which led to issues in the classroom. I also helped in a first grade classroom and managed volunteers for a morning activity hour, plus an hour study time at lunch. I loved this job more than anything else I have done. But Washington was not for me, while it was very beautiful, it was always cold.
So, I decided to do another year of AmeriCorps to help pay my off my student loans. Yes, that is right AmeriCorps will pay your students loans or give you move for future education. I was accepted an AmeriCorps VISTA Leader this time in Fresno, California. I was very excited to come back to California, but I had never been to Fresno and was warned that it was not the nicest place. I agreed with everyone, at first, but it grew on me. My position this time was team leader. I assisted the program manger with her 10 VISTA members at different sites. This position was also fulfilling and challenging. Never thought I would enjoy facilitating meetings.
When this position ended, the staff made me believe I would be hired as the volunteer coordinator but they picked someone from the outside. I always thought that was a poor decision on their part, but you cannot change people's minds...ever. So, I was out of a job and did not know what to do next. Unfortunately, Fresno does not have a great job market. I eventually found a job at a construction office, which was the worst job I have ever had. I only worked their nine months and was eventually poached by a local irrigation company.
Who knew I would ever work in agriculture, but I actually really enjoyed. This position started off a bit rocky. I was incredibly sick my first week, their was girl drama, but I was promoted from Administrative Assistance to Customer Service very quickly. I got the hang out things, eventually, and started doing orders. The people at this company were absolutely amazing. That is true about every job I have had, even if the job sucks and the boss yells at you, there is always someone there who has your back. The ladies at J helped me through hard times in the spring of 2016 and I could never thank them enough. I left in November of 2016 to pursue a relationship in Arizona...we will get back to that later.
AmeriCorps, here I am again! I was moving to Phoenix for other reasons but I wanted to get my foot back in the door of nonprofits. So I applied to a few AmeriCorps VISTA positions and was hired almost immediately to SMC. This was a great organization, but not enough to do through my year. I did not really learn any new skills, which was disappointing. I did, again, meet some amazing individuals. Things did not work out in Arizona, much to my disappointment.
So, here I am again in Fresno. California is my home and I will always end up here. Currently, looking for a job, healing emotionally, and waiting for a kidney. My life, so far, has been interesting and I need to remind myself that I have been much for fortunate that others. Most people do not get the adventure of living in three different states and working for nonprofits before turning 30. Even though I am facing a life threatening illness and will always have to deal with it, I can rise above it and still lead an interesting life.
My elementary, junior high, and high school years were filled with friends, mediocre grades, and band. I was never great at school, not sure why. I would love going to school, but the education portion...ya know, the important part, was never my focus. I wanted to hang out with my friends and drink soda with chips during lunch. My mom pushed me to join band and I enjoyed it from middle school until senior year. Again, I was not very good at it like studying. It got me through high school though. I loved going to practice and being a part of something special. I will always remember my high school band teacher, Mitch Bahr, for being one of the most passionate teachers I ever had. Aside from being a great influence in the classroom, he always helped students in his office during lunch or breaks. He is an example of what a teacher should be.
Later, I went to college because that is what you are "supposed" to do. It took me five years, not surprising. My major was art history because I found it interesting and I thought it would be easy to get some fabulous job in San Francisco after I graduated. Wrong. You need a PhD to get almost any job in a museum, unless you want to work in a gift shop for $10 an hour or volunteer for free. I struggled, then and now, with a plan for my life. I went back to an old job, then upgraded to the local optometrist office. This ended being a horrible decision. The job was fun and interesting, most of the time, but the doctor was a self righteous prick that tired to push religion on me during a review.
A week for two after I walked out on that job, I was accepted into AmeriCorps VISTA. I would serve as School Buddies Coordinator for an elementary school in Anacortes, WA. What an adventure?! I eventually served as an AmeriCorps VISTA for three different terms in three states, but not consecutively. I took a break between year two and three to work at a horrible construction company and my favorite job at a local irrigation company.
My first year in Washington was amazing. I found my passion in life was to work with young children. I wanted to help them, so they could achieve whatever they wanted to in life. My goal as a VISTA in that particular position was to match "troubled" students with community members that mentored them once or twice a week. The students loved their alone time with this new role model. Most of the students had issues at home which led to issues in the classroom. I also helped in a first grade classroom and managed volunteers for a morning activity hour, plus an hour study time at lunch. I loved this job more than anything else I have done. But Washington was not for me, while it was very beautiful, it was always cold.
So, I decided to do another year of AmeriCorps to help pay my off my student loans. Yes, that is right AmeriCorps will pay your students loans or give you move for future education. I was accepted an AmeriCorps VISTA Leader this time in Fresno, California. I was very excited to come back to California, but I had never been to Fresno and was warned that it was not the nicest place. I agreed with everyone, at first, but it grew on me. My position this time was team leader. I assisted the program manger with her 10 VISTA members at different sites. This position was also fulfilling and challenging. Never thought I would enjoy facilitating meetings.
When this position ended, the staff made me believe I would be hired as the volunteer coordinator but they picked someone from the outside. I always thought that was a poor decision on their part, but you cannot change people's minds...ever. So, I was out of a job and did not know what to do next. Unfortunately, Fresno does not have a great job market. I eventually found a job at a construction office, which was the worst job I have ever had. I only worked their nine months and was eventually poached by a local irrigation company.
Who knew I would ever work in agriculture, but I actually really enjoyed. This position started off a bit rocky. I was incredibly sick my first week, their was girl drama, but I was promoted from Administrative Assistance to Customer Service very quickly. I got the hang out things, eventually, and started doing orders. The people at this company were absolutely amazing. That is true about every job I have had, even if the job sucks and the boss yells at you, there is always someone there who has your back. The ladies at J helped me through hard times in the spring of 2016 and I could never thank them enough. I left in November of 2016 to pursue a relationship in Arizona...we will get back to that later.
AmeriCorps, here I am again! I was moving to Phoenix for other reasons but I wanted to get my foot back in the door of nonprofits. So I applied to a few AmeriCorps VISTA positions and was hired almost immediately to SMC. This was a great organization, but not enough to do through my year. I did not really learn any new skills, which was disappointing. I did, again, meet some amazing individuals. Things did not work out in Arizona, much to my disappointment.
So, here I am again in Fresno. California is my home and I will always end up here. Currently, looking for a job, healing emotionally, and waiting for a kidney. My life, so far, has been interesting and I need to remind myself that I have been much for fortunate that others. Most people do not get the adventure of living in three different states and working for nonprofits before turning 30. Even though I am facing a life threatening illness and will always have to deal with it, I can rise above it and still lead an interesting life.
Sunday, November 26, 2017
Introductions & Salutations
Greetings!
My name is Robyn Wickland. I am thirty years old and live in Central California. This blog is a way for me to express my feelings and thoughts through my journey with Chronic Kidney Disease. I want other young people with illnesses to understand that they are not alone and that sometimes you just feel like pure shit about life. Hopefully things will get easier in the next year for me!
I was diagnosed in March 2016 with Chronic Kidney Disease after going to the doctor for continually high blood pressure despite my young age and fairly healthy lifestyle. They figured, after testing, that I had been born with an under developed kidney on my left side that never grew like it was supposed to. On top of that, I had Essential Hypertension which is high blood pressure with no identifiable cause. My kidney could have caused it...it is a chicken or egg situation and doctors have no way of figuring what actually happened in my blood over the last 28 years.
After diagnosis, I was told to change my diet and continue excising but nothing too strenuous. Chronic Kidney Disease causes a number of delightful health issues which they doctors have to be cautious of through the patients life span. These include heart disease, vitamin d deficiency, diabetes, and more. So the nephrologist (kidney and renal specialist) also prescribed me two blood pressure medications, Vitamin D, sodium bicarbonate, and to stay on my birth control medication.
During my initial diagnosis, my GFR which is your kidney function was 33. The nephorlogist gave me 3-5 years until I would need a kidney tranplant. My function has gone down to 17% and testing has begun for transplant through UCSF (University of California San Francisco.) The future is scary as hell and I would like to get it over with as soon possible. This is not a possibility, unfortunately, because testing and insurance companies take time. Fingers are cross that it can happen in early 2018.
Follow this blog to learn what is happening, my thoughts on different subjects, and general feelings about being a sick person.
My name is Robyn Wickland. I am thirty years old and live in Central California. This blog is a way for me to express my feelings and thoughts through my journey with Chronic Kidney Disease. I want other young people with illnesses to understand that they are not alone and that sometimes you just feel like pure shit about life. Hopefully things will get easier in the next year for me!
I was diagnosed in March 2016 with Chronic Kidney Disease after going to the doctor for continually high blood pressure despite my young age and fairly healthy lifestyle. They figured, after testing, that I had been born with an under developed kidney on my left side that never grew like it was supposed to. On top of that, I had Essential Hypertension which is high blood pressure with no identifiable cause. My kidney could have caused it...it is a chicken or egg situation and doctors have no way of figuring what actually happened in my blood over the last 28 years.
After diagnosis, I was told to change my diet and continue excising but nothing too strenuous. Chronic Kidney Disease causes a number of delightful health issues which they doctors have to be cautious of through the patients life span. These include heart disease, vitamin d deficiency, diabetes, and more. So the nephrologist (kidney and renal specialist) also prescribed me two blood pressure medications, Vitamin D, sodium bicarbonate, and to stay on my birth control medication.
During my initial diagnosis, my GFR which is your kidney function was 33. The nephorlogist gave me 3-5 years until I would need a kidney tranplant. My function has gone down to 17% and testing has begun for transplant through UCSF (University of California San Francisco.) The future is scary as hell and I would like to get it over with as soon possible. This is not a possibility, unfortunately, because testing and insurance companies take time. Fingers are cross that it can happen in early 2018.
Follow this blog to learn what is happening, my thoughts on different subjects, and general feelings about being a sick person.
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