There is no Place Like Home

The holiday season brings people home. Home can be or mean a lot of different things to someone. I have found that "Home is where the heart is," is actually true!

My parents house is my real home and it is in Northern California. I grew up in the same house from age 2 until ...too old. I don't go home that much anymore, for two reasons. First, it is far away. It was especially far from Phoenix for the last year. Second, I don't have any friends that I am close with left in the area. I love visiting my parents and my dog. It is also nice to be "home" once or twice a year.

My current home, where I live, is in Fresno. We moved into this house in 2015. The B's fixed up the house and it is still a bit of work-in-progress. Its a great little house. Although I was gone for almost a year, the second I walked back in the house in October I felt at home. I love this house, the dog, my room, and everything included. We made this house our own and that is why it is special.

This home includes the satellite home in Kingsburg. Thank you for always including me in your family activities. I really enjoyed Tamale Day 2017. I feel like I am an honorary B and an honorary Mexican now! 

Phoenix only felt like home because I was with people I loved. I did not like our house or the location. It was far away from everything. The cars were broken into, the door was kicked in, and some a-hole threw egg on my car. One roommate was fabulous, the other two were awful. I was destroyed by the ending of the Arizona adventure, but I do feel more at home now.

I have also lived in Humboldt County and Anacortes, WA. These are two of the most beautiful places I have ever been. Especially Fern Canyon in Humboldt. I found beauty every single day of the year in Anacortes. My family went camping almost every year in Humboldt as kids, so I decided to go there for college. College was tough, personally, but I loved being in that area. My favorite thing to do was drive around somewhere I had never been. I remember driving the Lost Coast with friends once, amazing. These places are great, but they did not really feel like home to me. 

My moving home would have to be with JBS. We have been friends since high school. We used to get Happy Meals at McDonald's and drive through the car wash. Aw, memories. I have also felt at home with her, her mom, and now her husband. 

Fresno has it's own issues and has a horrible job market, but I still love it. I love my friends and the people who have become my family here. I plan to stay indefinitely. Leaving last year was a mistake and I know that now. I lost so much and everything ended so much sooner than I expected. To anyone I hurt with that decision, I am so sorry.

Donor Relations

So far, I have two people being tested to donate a kidney. The waiting and the process is almost excruciating. But like I said before, I am not patient. On December 1st, I posted my official ask. I will continue to post in every few weeks. The more people tested the more likely I am to find the perfect match...kind of like dating!

I would like to explain what I know about the testing process so far. This is experience with University of California San Francisco. It varies from each medical center, so do not quote me directly on how your process might work.

Step 1: Fill out the donor health questionnaire.
Step 2: Wait for Helen with donor relations at UCSF to call you for further questions and your next step.
Step 3: Receive a special package from FedEx so you can collect your own urine for 24 hours in an orange jug.
Step 4: Complete urine and blood workup at Lab Corp.
Next Steps: Not sure what lies ahead, this is as far as MY, CB, and myself have gotten.

My Official Ask:

I don't want to ask for this and I don't want to be a burden to anyone, but I am in need of a Kidney Transplant. I have been officially added the waiting list through UCSF (University of California San Francisco.) Today, I was informed that my part now is to just wait or find a donor. If I do not find a living donor that is a match, I will have to wait approximately 7-8 years for a deceased donor. By that time I will be 37 and probably on dialysis for a few years. This is terrifying.

You do not need to know your blood type yet, but if you are interested in donating to me you do need my name and birthday. Just ask!

Please consider being a kidney donor. I have resources that I can give your for more information about your part in the process. I have type O+ and can only accept O+/- organ donations.

If you are really interested in donating, please follow this link to "apply" with UCSF: www.ucdonor.org

Do's and Don'ts

There are things you can say to a chronically ill person that might rub them the wrong way. You probably didn't mean anything by what you said or you were completely unaware of their situation. This is not to sound mean or bossy, just to make people a little more aware.

Here is a few things not to say to "sick" person:

1. But you don't look sick. 
A lot of people suffer from illnesses that are not visible. Mine, chronic kidney disease, is not noticeable. Except for my weight loss due to diet changes. Just because they don't have bandages, face mask, or any other medical gear on them does not mean they are not fighting a huge internal battle.

2. Aren't you too young?
I was told this one a lot in Phoenix by doctors or other office staff. When I am waiting in a the front lobby for my name to be called and I am the youngest person by about 25 years or more, this is no longer a compliment. It makes me feel self conscious. "Fantastic, I have the body of a 70 year old on the inside!"

3. At least you don't have cancer
This also does not help. Yes, cancer is HORRIBLE. But living with a lifelong illness that does not have a cure (like chemo) is also horrible. It is a pain in the ass and there are daily reminders.

4. Try this diet or herbal supplement, it will help.
With CKD, you are told to avoid supplements. You are also limited in your food choices, my least favorite part. So it won't help if you suggest these things, but I will try to always be polite about turning you down. I know you mean well.

5. It's not a big deal.
My (idiot) general doctor told me that it was not a big deal that my kidneys were not functioning correctly. Fuck you lady, it is a huge deal now. Other people say this to me too. It is a life long struggle, not sure how many times I can spell that out for someone.

Here are a few things you can do or say to that person in your life:

1. Ask how they are dealing with everything.
This helps so much. Even if the person breaks down into tears, just listen to them. That is all people need sometimes. An open ear and a shoulder to cry on.

2. Ask if you can help them in some way.
Also incredibly helpful. If you can help, great! If you just send the offer out, even better.

3. Send a little card or gift.
I personally LOVE getting greating cards in the mail. My friend, KH, is great at that and always knows what to say to make me feel better. Small gifts are nice, if you are financially inclined. There are websites and Etsy shops that you can purchase disease specific items. I think that is a fantastic idea!

Remembering Newtown

Five years ago today, I was sitting in Island View Elementary School in Anacortes, Washington working as an AmeriCorps VISTA. Early that morning someone said there had been a shooting on the East Coast and as details emerged it was even more heartbreaking. The shooting had taken place in an elementary school. The exact location where I was but on the exact opposite side of the country. 

Twenty eight people were killed that day in Newtown, Connecticut. A young man named, Adam Lanza, who suffered from mental health issues had killed his own mother then went to Sandy Hook Elementary School. There were six teachers and administrators killed trying to protect their students. The other twenty students that died that day were mostly in kindergarten. They were only six or seven years old. Can you imagine the horror of a mass shooting, let alone a mass shooting of small children?

I have never been involved in a shooting and I think I only know one person that was actually shot. But the events that took place five years ago hit me the hardest. It was almost painful to see all of the little kids at our school that day and the following. My heart ached for the parents of the students. I had only been with Island View for two weeks, but the students their had already touched a place in my heart. 

The principal told all of the staff not to talk about it or pull it up on our computers. He wanted to protect his students, just like the staff at Sandy Hook. He thought it was best for the parents to discuss and explain what had happened, if they felt fit to do so. I agreed with him on this. It was not a subject to talk about lightly. There was a place and a time to discuss it. 

The place and time to talk about it has been the last five years. There are two issues that need to change in the United States and they directly relate to the shooting in Newtown. Mental health and Gun Control. These issues only seem to get brought up when something horrible happens, but then action is not taken. 

Gun Control:
According to this article from Vox, which was posted today, there have been 1,576 mass shootings in the United States since Sandy Hook. Those shooting left 1,788 people dead and over 6,000 injured. These numbers are insane. I do not suggest banning all firearms, that just wouldn't work. Look at prohibition. Also, I have shot guns before and kind it quite exhilarating. But I do not think anyone needs to own machine guns, semi automatic rifles, or guns that have been modified to do more damage. This would be the "bump stalk" that the recent Las Vegas shooter used which speeds up the discharge of the bullets. That shooter also had about 23 guns with him at the time. No one should own that many weapons of any kind. There should be rules or laws that are more strict about gun purchasing. A background check should be required for all purchases, online or in person. There should not be loopholes in certain states or at gun shows. All gun owners must own a license as well. If you need a license to drive a car, then you should definitely have one to carry a weapon on your body or in your home. 

Although, maybe we should ban guns like Australia did. In April 1996, Australia was rocked by a mass murder in Port Arthur, Tasmania. Martin Bryant went a killing rampage for two days. He killed 35 people and injured 24 (including himself.) The police never found out why Bryant went on the mass killing in the small town, even after his capture. But Australia immediately went to work. In 1997, they passed new laws in gun control. "Following the spree, the Prime Minister of Australia, John Howard, introduced strict gun control laws within Australia and formulated the National Firearms Programme Implementation Act 1996, restricting the private ownership of high-capacity semi-automatic rifles, semi-automatic shotguns and pump-action shotguns as well as introducing uniform firearms licensing. It was implemented with bipartisan support by the Commonwealth, states and territories." (Parliament of Australia) 

Just some food for thought on that one, since Australia has not had a mass shooting since this event. 

Mental Health:
Almost every mass shooting in America leads back to mental health. Adam Lanza suffered from a variety of 
illnesses and an obsession with violence. Some say this was bound to lead to a murder of some kind. The 
Aurora, Colorado shooting in July 20, 2012 during a premiere screening of The Dark Knight took the lives 
of 24 people and injured another 140. James Holmes now sits incarcerated for 12 life sentences without  
parole. Both of these men were young, but suffered in their own minds from more than one issue. If 
someone had sought help for them from a younger age, maybe these events would not have happened 
and all of those lives would not have been lost. 

I do know, first hand, what a family member with mental health issues can do to a family. It causes stress,
distance, fear, and misunderstandings. A parent never wants their child to suffer, physically or mentally, but 
when it is mentally it can be harder to deal with. There is no cure for mental illness. There are treatment plans 
with therapy and medication. The trouble is that sometimes people with schizophrenia or other issues 
don't want to take their medication. It can make them feel dull or lifeless. Or some people really don't like 
being told what to do. 

The day after the killings in Sandy Hook, during the media out cry and rage, a mother and writer published 
an article. Liza Long wrote "I am Adam Lanza's Mother." She was not his mother, but she was a mother of 
a child similar to Adam. Please click here to read her letter. Long wrote of the pain and misunderstood 
feelings from others dealing with her own child that "suffered" from mental issues. She is brutally honest 
about her feelings and lets the read know everything, even if the names have been changed.

President Obama (miss you buddy) attempted to make progress on gun control, but not get too far. And we all know that Twitter Loving Spray Tan Obsessed Man in the current White House won't do a damn thing. So congress needs to move forward. If American politicians can work together, difficult I know, to do something about both of these 
issues maybe we will never hear of twenty elementary students murdered for no reason ever again. If 
you do not agree with any gun control, I suggest you watch the "Newtown" documentary on Netflix. 
You might have a better understanding after what the parents in Newtown still suffering after 
losing their children. 

The Struggle is Real and it is Your Own

"The grass is always greener on the other side of the fence." Do you ever feel like this saying is true? I have often felt that it is true, no matter who I was comparing myself to. Things seemed easier or simpler for others. Or they just seemed lucky. But another saying that is much more true, "don't judge a book by it's cover," is how people should actually think of the world. 

Throughout one's life, a person can struggle with mental health, physical health, finances, school, work, and any number of other issues that can arise. I personally am struggling with health, heartache, and employment. I have also been dealing with a recent breakup that was also a loss of a long time friendship. There are good days and bad, currently the good days are  outnumbering the bad. It helps to exercise and distract with television. 

For a long time now, I have struggled with figuring out what I want to do with my life. My dream job is unobtainable, in my mind, and I have never really had a major goal in life. For this, I am not a failure. I just do not have a specific direction to follow. This is okay. Not every knows exactly what to do with their life or how to achieve that goal. Throwing ideas in the air is great, but it is not a solid solution.

Another thing that is not a solution and has never helped me: tough love. I do not react well when people tell me what to do or what decisions to make. It is my life. I will take your input and usually respect what you have to say. But in the end I will make my own decisions. It is not okay to berate a person who might be struggling with something you do not understand. If you want to support or help a person in need, ask them how to help. 

My brain likes to recount events and conversations to attempt to fix them. This is not possible, of course. What has happened is in the past and there is usually nothing you can do about it. This is especially painful when you have gone through a breakup that was not mutual. I have never been able to turn off my thoughts or only focus on the future. It is also hard to focus on the future when everything is so unclear. I do not know when my transplant will occur. There are millions of questions that come along with the transplant itself and what life will be like afterwards. 

When you are feeling lost or in pain, it is best to reach out to others. If you do not, everything will bottle up and explode in ways you cannot predict. There are multiple ways to communicate your pain to other people. These could include therapy, art, talk to family or friends, and you can even attend support group meetings if you are dealing with something specific. There is always someone who understands what you are going through, you just have to find them and reach out. 

Your struggle is your own and your's to deal with, but remember someone out there is willing to help you. 

The Bitch of Living

The worst part of life, in my opinion, is waiting. The title of today's blog is a song from 2006 Broadway show, "Spring Awakening" with Jonathan Groff and Lea Michele. The song has nothing to do with waiting, but it seemed fitting. Plus it gets stuck in my head every time I hear it.  

I have never been a patient person. It doesn't matter if something good or bad is coming soon, it just needs to get here faster. So when I was diagnosed with my illness and the doctor said 3-5 years I had mixed feelings. On first thought, it was great that I could lead a healthy life for that much longer. On the other hand, I just want to get things over with and move on.

That is not possible when you have a chronic illness. Chronic is defined as "persisting for a long time or constantly recurring." There is no getting around it or recovering like people suggest to me all the time. I have to live with this for the rest of my life. Which means, even after transplant I will not be fixed or cured or completely healthy. What a bitch, right?

Anyway, back to waiting and patience. Right now, all I am doing is waiting for UCSF. I have at least two donors being processed through donor relations. But everything takes time, so it is a slow process. I want to just move forward with the transplant so I can get my life moving forward. I feel kind of stuck in this weird limbo. Three to six months, says UCSF. Fingers crossed!

Arteriovenous Fistula

Have you ever heard those words? Do you know what they mean? This time last year, I don't think I had any idea what the term meant. I had learned each word through my years of medical fascination on television, but I never thought I would experience them first hand.

In June of 2017, only six months ago, I was told by my nephrologist that my kidney function had dropped dramatically. He was happy to put me on the list as soon as possible, but he also wanted me to explore the idea of dialysis. This was a good appointment and bad. I was exciting and nervous to move forward with the transplant, but I was absolutely dreading anything having to do with dialysis.

Dialysis is needing when you are in End Stage Renal Disease and your function has fallen to 10%. There is more than one type of dialysis, but I was only interested in Hemodialysis if I was going to have it at all. I hated the idea of something in my stomach even more than the idea of something in my arm or chest. In hemodialysis, you go three times per week for approximately 2.5 hours. While you are there, a machine is plugged into and out of your veins to "clean" your blood. Dialysis does the job your kidneys can no longer do. This sounds awful, especially when you are young and mostly healthy.

First I went to my neprhologist's office at a different location for an ultrasound of my veins. They need to find which veins are the strongest in your arms and where the best placement would be. So, I was sent to do a consultation with a vascular surgeon that would make my scar look "pretty." Boy, was that a lie. Boy #3 and I met with Dr. Brett Siegrist in Downtown Phoenix. Again, I was the youngest person in the waiting room by about 25 years or more. We both really liked this doctor. I would highly recommend him to anyone in Arizona needed vascular work. He commented on how smart and understanding I was of the medical terminology. He explained most of the procedure and left me to think everything.

I spoke with family, friends, coworkers, Boy #3, and anyone that might listen whether or not I should go through with the surgery. No one would decide for me, but most people thought it would be "better safe than sorry." It was important to do it sooner rather than later because the fistula itself needs time to develop and mature. At this point, it was just a precaution in case I did not find a living donor. The waiting list for my blood type is 5-7 years for a cadaver (dead body) kidney. By that point, I would be 37 years old and need dialysis.

I eventually said yes to the surgery and it was scheduled for July 10, 2017, exactly fives months ago. I was so nervous, anxious, and uncomfortable with the idea. It was in outpatient, so it sounded like no big deal, right? Boy #3 took me to Banner Health in Phoenix that day and we checked in. Waiting was the worst part. Waiting for the check in process to be over. Waiting for them to call me for pre-op. Waiting. Waiting. Waiting.

Eventually, I had to leave my boy and go upstairs to prep alone. I was absolutely terrified. I knew this surgery was going to change my arm for the rest of my life. If you google an AV Fistula, you will see what I mean. The photos show lumpy and deformed veins in the arms of much older people. This was hard for me to accept. A few years ago, I had finally started to care about what I ate and started exercising. This lead to my body looking better and me finally gaining self confidence. This surgery just brought that back down. Aside from vanity, I also knew that it was not a cure or a fix for anything. It was one step closer to dialysis, which just meant I was getting more sick.

During my pre-op with a very nice young nurse, I started to cry. She let Boy #3 stay with me the whole time. He kept me mostly calm and help me use the restroom down the hall after I was already hooked up to the machines. Lots of doctors and nurses spoke with me, which was overwhelming. Then the surgeons, yes there was more than one, told me there would be two procedures not one. I flipped out. I did not, under any circumstances want to come back in six weeks to let them cut my arm open again. The second procedure would be to cut my arm higher up, near my arm pit, to move my vein closer to the surface for better access during dialysis. No thank. Boy #3 tried to calm me down and so did the doctors.It was just unimaginable having to go through all of this again. 

They explained that they would cut into my arm to create the fistula. A fistula, of this kind, is a vein and an artery in my arm that are "sewn" together to create more blood flow in the area. This is so a dialyzer can have the best flow of your blood. See picture below from DaVita.

After all of the doctors and assistants left my "room," I was wheeled into the surgery room. I was crying and couldn't contain myself. I remember them moving onto the surgery table and strapping my arms down, then someone telling me it was okay. Then nothing...

Next thing, I knew I was waking up a different room. This must be their recovery wing, I thought to myself. Their was a nurse there doing her stuff on my machines and my notes. My arm felt huge and strange, plus the compression air pumps with still on my calves. I had forgotten about those until I woke up. I was woozy and weird from the anesthesia. It took me a while to wake up and event my boy appeared to help me get dressed. Dr. Siegrist came into to give me a recap of everything. He did everything that day, even though he did not want to. He did that for me and my anxiety. I will always appreciate that. They created the fistula and moved my vein, so my whole upper arm had been affected. From elbow almost to armpit. OUCH.

The ride home was uncomfortable and seemed extremely long. I requested McDonalds, mostly for the McFlurry. But once I got home and took one bite, I had to throw up. Damn you anesthesia. Boy #3 was absolutely amazing during my recovering and during the surgery itself. I will also look back in admiration for that. Thank you for taking such good care of me that day and the next two week KWA.

My recovery took much longer than expected since they did everything in one day. I was off of work for two weeks. It hurt to do everything, including sleep. I had to sleep with my arm propped up on pillows so it was awkward. I had to do everything with one hand because I could barely move my left. The last two weeks of July were the mostly painful and uncomfortable weeks of my entire life. I don't think I mentioned before that it is my left arm. It is usually done on your non-dominant hand.

It took weeks to heal. I also had a slight setback with the bandages getting stuck. My incisions with closed with glue instead of stitches and the bandage ended up sticking to the middle incision. It was disgusting and incredibly painful to peal off. Forget ripping it off like a band-aid. Fuck that.

After going through all of that and starting to feel normal again, the fistula started to "work." This fistula is supposed to mature over time, so it gets stronger with the flow of blood. But when it is in your arm, you can feel and hear your blood flow. It is creepy the first time you experience it. If you place your hand in the crook of my elbow, you can feel a vibration. It is also like a mini cell phone vibrating inside my arm. When I put my arm up to my ear, I can hear the blood flowing. What a bizarre thing to get use to, right?

Not only does it have a sound and a distinct feel, I cannot sleep on the side anymore or care heavy things. I attempted to do light weights at the gym this week and had to stop from the pain. It was only five pounds! I also can't wear watches or bracelets on that arm. Tight tops, forget those too. My left hand also gets much colder than the right now, another odd sensation. Throughout the day, my surgery arm has bizarre sensations, cramps, and pains. It is delightful, but maybe I will get used to it someday. Maybe some handsome young man will find it interesting and won't mind that my vein shows more than his.

Getting ready for surgery.

Fistula in action.

Ideal Man

Dear Future Husband,

It may seem silly to write this letter when I may or may not have met you yet. This is a letter to the ideal man. Hopefully you are tall, dark, and handsome just like the movies always told me.

Thank you for loving me despite all of my flaws. At least what I consider my flaws, inside and out. By now, I have two major surgery scars. These are my outside flaws. My arm for precaution and my stomach to save my life. These are not the most attractive things to look at. Sometimes I feel like my surgery arm looks so ugly that I never want to show anyone.  You have never minded and even encourage me to be proud of them. My inside flaws are my emotional scars from previous relationships, pain, and mental insecurities. You have always been there to comfort and guide me away from anxious feelings. You were always there with the right thing to say or do to cheer me up after a rough day.

Thank you for making me laugh, feel desired, and communicating your true feelings. Relationships, of any kind, are a two way street. To be successful, you must both communicate what is going on in your life, your heart, and your head. There is more to it than that. There is sexual attraction, romance, and being silly together. You, sir, are the perfect combination of these things. The ability to make a women smile and make her blush, is definitely a positive in a relationship.

Thank you for being an excellent chef and a great adventurer. These probably shouldn't matter but it is what I have always wanted in a man. Make me a great meal and I will clean the dishes every time. Take me somewhere we have never been to explore and just sit by a lake. I will sit in try that hammock even if terrifies me. You make me want to try new things.

Thank you for understanding my stance of different issues. Even if we do not agree on politics, alcohol, or anything else, you never argue or push me to change my mind. The most important of these would be children. I don't necessarily want them and probably can never have them. You have understood that from the beginning and want the same thing. You also always have an open mind and are willing to listen.

Thank you for maintaining a healthy lifestyle with me. Sure, we can eat a pizza on Saturday night and you can order beer. But on the whole picture, you exercise and eat healthy which keeps me doing those things and keeping this little bean going for as long as possible. Thank you for never smoking, what a disgusting habit.

Thank you for holding my hand while walking public, opening doors for me, snuggling on the couch with a movie, and telling me I look beautiful even if I don't feel it.

Most of all thank you for being you. Thank you for loving me and living this life together. I know know what I had been searching for all of those years. You were never bothered by my illness, my scars, or my sick person insecurities. Thank you.

Yours forever,
Robyn

Thankful Thursday Part II

Here it is, Thankful Thursday Part 2.

This week I would like to thank my parents. Everyone should be lucky enough to have parents as supportive as mine. They have been there through everything in my life. It has been financial and emotional support even if they have not agreed with all of my choices.

I have tried to be a "good daughter," but things have challenged me in life. New parents hope and dream for amazing things for their child. "My child is going to be a doctor." "My child is going to be a lawyer." "My child is going to be president of the United States." I struggled all through school with mediocre grades and not enough focus. This led to poor choices in high school without any direction for college. I slid through 3 years at a junior college, still not knowing what I wanted to do with my life. My parents tried to help me with all of this, but it was up to me and me alone. I eventually went to Humboldt State University. They approved of that choice since we had camped their a lot as a family when we were little. My choice of Art History as a major was not as well received. I should have listened to them at the time since it go me absolutely nowhere. But I did graduate and I believe that is the important part of that story.

The last six years after college, I have bounced from thing to thing. Although most of it has been rewarding, I still do not have a direct path in life. I assume this worries both of my parents. I feel sometimes that I could have been more and maybe this disappoints them. It could be worse, my worse. At least I am not a criminal or a drug addict.

Burden is a painful word. Since my diagnosis last year, I feel like I have put pressure and worry in my parents lives. They have enough to deal with. My mom has her own health to worry about and my dad looks after her. I never wanted to add more to their plate.

Despite my insecure feelings at times, I know that both of my parents love me no matter what happens. All they want for their children is happiness. Hopefully we can both achieve that more often any other feeling in life.

I love you mom and dad.

Dear Santa: My Medical Wishlist

It is the most wonderful time of the year!

Christmas is magical, at least it should be. There are lights, decorations, music, food, family, friends, and sometimes gifts. My two biggest requests for Santa this year are a new kidney and happiness, but he cannot really provide those. Both of those are up to me and my medical team at UCSF. But for now I can still write Santa a Christmas wishlist just like I did when I was a child, except it is a little medically focused for after transplant.

- Qardio Base 2, Wireless Smart Scale and Body Analyzer  in White

- VogMask, Surgical & Respiratory Filter in Hummingbird Size Medium

- Digital Thermometer, Oral for Adults

- Hand Sanitizers, Bath & Body Works Vanilla or Lavender

- Hidrate Spark, Smart Water Bottle in Purple or Teal

- "Surviving and Thriving with an Invisible Chronic Illness" by Ilana Jacqueline

- Vionic Slip On Sneaker, in Natural Snake Size 9

- Kenmore Small Room Air Purifier

There are also small gifts that most people dealing with chronic illness would enjoy, please follow this link for some great ideas from The Mighty: 29 Gift Ideas for Your Chronically Ill Loved Ones

Needles

I have never been afraid of needles. I didn't like getting shots as a child, but it was the pain not the needle. By this point in my life, I have had a handful of piercings, another handful of tattoos, and had my blood drawn about 100 times. It never bothers me. Neither does the site of blood. Today, I am going to tell you about my first medical procedure in the out patient hospital. It has to do with giant needles.

On May 4, 2016 (yes, Star Wars Day) I went to Clovis Community Hospital with my best friend CB. She was kind of enough to take the day off school and work to stay with me in the hospital, as boring as it probably was. I was there to get a biopsy of my right kidney, which is the normal sized one. This was to make sure my Kidney Disease was not caused by something like a blood issue, lupus, etc.

The National Kidney Foundation describes a kidney biopsy as the following:

A kidney biopsy involves taking one or more tiny pieces (samples) of your kidney to look at with special microscopes. The microscopes make it possible to see the samples in greater detail.

The biopsy sample may be taken in one of two ways:

1. Percutaneous (through the skin) biopsy: a needle placed through the skin that lies over the kidney and guided to the right place in the kidney, usually with the help of ultrasound.
2. Open biopsy: the kidney sample is taken directly from the kidney during surgery.
   The kidney sample is then sent to a doctor (pathologist) who looks at it with microscopes. He or she will check for any signs of disease.

My biopsy was done percutaneously. They checked me, got me dressed, and eventually wheeled me into an operating room that also had an MRI or body scanning machine. I was immediately put to sleep, thank goodness. I get really anxious in hospitals, so the faster they put me to sleep the better. 

Next thing I knew, I woke up in an odd position in my original prep area staring at CB. She was laughing at me a little. Apparently, I had been making some odd faces and maybe talking in my sleep. All in all my first procedure wasn't bad at all. I did not even have to look at the equipment they used and I did not feel a thing.

The next day was the bad part. I felt like someone had hit me with their car in right lower plank area, but I made it through a whole day at work. This medical procedure left a small dot on my back and some lines the medical team made with their purple markers, but I did not get a cool scar on this trip. 

A while later, maybe the next week, my doctor gave me the results. The biopsy proved that my right kidney was not function correctly and has been damaged for some time due to high blood pressure. We both believe that my right kidney has over compensated since birth or since I was quite young. Maybe this caused the high blood pressure or the high blood pressure caused the problem, we will never know. But at least I don't have a blood disorder or an autoimmune disease.

(Picture collage on homepage is from the biopsy)

Attempting to be Thirty, Flirty, and Thriving

Jennifer Garner's character in "13 Going On 30" always said she wanted to be thirty, flirty, and thriving. Well, I turned 30 years old in November and I am nowhere near thriving. My roommates convinced me to set some goals for this year. It is also almost New Years Resolution time.

It has been a rough year for the U.S. (cough, Trump, cough) and for myself. While you cannot control somethings in life, you can control others.

Here is a quick bucket list for the new year, not in a specific order:

- Get a kidney transplant
- Travel somewhere I have never been before
- Read at least 1 book per month
- Pay off my credit card
- Go to a Giants or Warriors game in the Bay Area
- Take a dance class
- Go to a shooting range
- Attend at least 1 Paint Nite and 1 Plant Nite
- Make a new friend


And one new rule: do not date until October 1st or at least six months after transplant. (Exception to this rule: disregard if a certain someone changes their mind.) 2018 is the year for healing and to focus on a higher self.

My Ask

This is hard for me. 

I don't want to ask for this and I don't want to be a burden to anyone, but I am in need of a Kidney Transplant. I have been officially added the waiting list through UCSF (University of California San Francisco.) Today, I was informed that my part now is to just wait or find a donor. If I do not find a living donor that is a match, I will have to wait approximately 7-8 years for a deceased donor. By that time I will be 37 and probably on dialysis for a few years. This is terrifying.

Please consider being a kidney donor. I have resources that I can give your for more information about your part in the process. I have type O+ and can only accept O+/- organ donations.

If you are really interested in donating, please follow this link to "apply" with UCSF: www.ucdonor.org

The Deception of Movies

Movies have always played a major role in my life. I believe my dad passed this on to me. He always watches TCM with the old movies. He always knew every actors name and what they were known for. I am the same way, but with a newer generation of actors and films. Most movies have a romantic element to them and some are pure romance. For example, romantic comedy is it's own section on Netflix and what used to be movie rental places. Some of these movies are wonderful. My favorite is probably "When Harry Met Sally," it is a classic! But there is one problem with movies, they lie. They give an exception that your life will be full of great romantic gestures. I have never found this to be true.

My exceptions were high and that I would just happen to find someone. That perfect someone who was tall, dark, and handsome that would sweep me off my feet. While keeping your expectations high the actual men in your life is a good thing. It is not a good thing to keep your expectations anything close to movies. No one is going to meet you at the top of the Empire State Building to profess their love. No one is going to get to the airport and turn around to say I love you. These scenarios have never happened to anyone I know. Ever.

I was never big on dating. A lot of my friends had boyfriends from high school or right after. I was always jealous of this. Always. My relationship list is short. I don't mind that. I personally feel it is better to have a few long term relationships that a dozen short ones that don't mean much. After my experiences in love, so far, I have lowered my expectations and ideas of what love really means.

Here are three relationships that have meant the most in my life. I will not use names for privacy of the other parties mentioned. This is going to be long, thank you for reading it in it's entirety in advance.

Boy #1: We met online. The first person had the balls to meet from a website. It was strange to meet someone in person that you have spoken to only through text. He was very nice and made me feel good about myself. He also made me feel desired by a man for the first time. We did not share a lot of common interests, but we shared a brief relationship. It was an introduction into different things for me. We won't get too deep that but I told myself "this boy is nice and genuinely cares for me, so why not?" Again, this was brief. He left for a job. I got over it very quickly but Boy #1 will always hold a certain place in my heart.

Boy #2: Again, I met this boy online. But it was different from that very first cup of tea. Everything clicked correctly. It was summer and I was wearing my "hooker shirt" that showed off a little something something. I was also wearing shorts. I remember this because I had recently hurt both of my knees in very simple ways on separate occasions. He was so cute that he made up a hilarious adventure story about how I actually hurt my knees. We talked and sipped our drinks. At the end we agreed to keep talking, but we were both headed out of town for family trips or something. The next few dates were in fact like a movie. On one we went to an outside garden that had food trucks and live music. It started to storm with rain and lightning and thunder out of nowhere. It was perfect though. We walked around in the rain and stayed for the music. I eventually met his friends, who I adored. They all said praises about me and said how happy Boy #2 was since we had met. I was happier than I had been in a long time, maybe ever. We both loved movies and he had a knowledge for music that was very impressive. We hung out on Wednesday nights to watch American Horror Story Hotel. I even attempted to make dinner on those nights. Every weekend we would hang out alone or with his friends. I did not even mind going to bars and micro breweries, even though I do not drink alcohol. It was fun every single time. We were passionate together and shared inside jokes. Everything seemed perfect for nine months. My first "real" boyfriend and definitely my longest relationship. I was starting to see a future with this person, but everything came apart after my diagnosis of kidney disease. He seemed supportive at first and even introduced me to a coworker who's daughter was dealing with similar issues. (Hey SB and MR!) Boy #2 started to act kind of distant. I knew something was weird when he didn't want me to spend the night and did not respond to texts. Finally, I asked to talk to him. Boy #2 said he was having trouble dealing with me diagnosis. Blah blah blah. A week goes by after this discussion and nothing happens between us, so I ask to talk to him again. We went to dinner after work and I thought everything would be okay since we talked about normal stuff at dinner. I was wrong. We back to his house and he broke up with me. He could not handle being with me. He did not know how to deal with how sick I could get. He stopped loving me. How could someone that you spend almost a year with say something like that? At the time, I was so heart broken. It hurt so much. I really did not understand how someone could "love" you and break you heart so easily. Sometimes, I still miss him or maybe I miss the idea of him. It is hard to distinguish feelings. Boy #2 will always be the first boy I ever loved and will always be that person to me. I realized later that he did not deserve me and I deserve better. I need someone who is strong enough to love me at my best and my worst.

Boy #3: I am still healing from this breakup and I don't know when I will be over it. We did not meet online. I had known Boy #3 since high school, so about fourteen years when we got together. I don't think either of us planned to get together. Last summer, after recovering from Boy #2, I went on a trip to Arizona with a friend from high school. This friend had been a major part of my life for about ten years. I was even in his wedding and spent countless nights at his apartment right after high school. We had always gotten along so well and he always knew how to make me laugh. I thought we were just going on a weekend trip to hangout with his brother and another friend from high school. We talked about everything that had happened in our lives the last two years. He told me about his ex, who I sued to consider one of my best friends. I told him about my recent breakup and my health. It was a great trip. Swimming, food, friends, movies, what else could you ask for? A few times, I thought this guy is flirting with me. On the car ride home, at about two in the morning, I knew he was flirting with me but I was so tired I didn't really think clearly. Two weeks later, we attended our high school reunion together. I was not sure at the time if it was a date or not, but I could tell afterwards that it was. We kept texting after this. I had always liked spending time with him. We planned a weekend trip to a part of California neither of us had been to and wasn't too far away. This is where things changed. It was one of the best weekends I had ever had. We explored and went on a zip line. He touched my shoulder after the zip line and I got goosebumps. We went back to our Airbnb to relax until dinner. Boy #3 kissed me and I couldn't believe it. We stayed there for much longer than we meant to and went to a late dinner. The next day we explored more and went to a train museum. He we walked around holding hands and kissing throughout the day. It was perfect. He had liked me for a long time, but was involved with someone else. I had felt the same way. Now was the perfect time. I really thought, "Finally, my time for happiness." I thought it was fate. From there, we met up on a few weeks. He lived 2 1/2 hours north of me, so I would drive up on Fridays after work. We went to movies, dinner, and even went kayaking. It was so wonderful. He was moving to Arizona. He invited me to go too. I thought, what a great adventure. Why not? I left my job that I loved and my roommates that I loved. Things were great with this boy in Arizona. In December, we went for a hike that was the most physically challenging thing I had ever done. I finally said, "I love you." We were happy. I was happy again. My job was not what I had expected and my health was slowly declining, but Boy #3 was always there to cheer me up. He kept me grounded, sane, happy, desired, loved. He also made more adventurous, which I appreciated. My parents already knew this boy and loved him too. I knew his entire family and loved them back. Boy #3 supported my more than I could have asked in July when I had to have surgery. It was terrifying beforehand and horrible after, but he was there. It was true love. How could you care for someone after surgery like that and not think so? Unless of course they are a medical professional. Things had become a little stagnant after surgery. I wasn't able to do much and it was way too hot outside, plus we didn't have much money to do things. Nonetheless, I had fallen so in love with this boy. I felt like I could have stayed with him forever. I was hoping that would happen, even if it wasn't marriage. I knew he wasn't a huge fan of marriage because of what had happened the first time, but I did not know his feelings about it. He was gone for a whole month to visit family. I gave him space. I did not was to be an annoying girlfriend asking a million questions. He returned from his trip and everything was great again. Or so I thought. In the end of September, this year, he acted weird for a few days but I didn't think any of it. On a Saturday, we went to brunch and ran some errands. I thought he was just tired. Back when we got together in September 2016, he had spoken of a life together in five years. We both discussed not ruining our friendship just for a nights together. I was not a compulsive person. I would not have started the relationship or moved if I thought there was any chance of it ending. I was so wrong. In the evening, after spending the entire day together, he said we needed to talk. The dreaded words for anyone. He had decided to leave Arizona. I think I understand now. Boy #3 had moved to Arizona with big dreams and they had not panned out like he thought. He got stuck in his own head and ran out of resources, so he found an easier way out. He broke up with me that evening and moved on Wednesday. We had been together one year and three weeks. We lived together. I thought we were starting a life together. Maybe he never felt as strongly for me as I did for him. I don't know if I will ever know what happened in his head. The way things happened that evening made me second guess everything that had happened between us. Was a rebound for him? Did he love me like I loved him? Did he ever see a future with me? Why? How could he leave so abruptly and not explain? Why didn't he share with me how he was feeling? I could have helped or at least tried to help. People have told me to move on or get over it. It is not that simple when you have known someone half your life and been so involved with each other. There were strong connections and now they are broken. I feel like I cannot talk to his family or to him. He claimed he wanted to be friends, but how. Can you really be friends with an ex after so much pain?I still love Boy #3 and I think I always will in some capacity. Maybe we are meant for more someday or maybe it is over forever. It is not up to me, since I did not choose the path we are on now.

Boy #2 broke up with me because of my illness. Boy #3 cared for me despite my illness.

There is a Broadway musical and movie called "The Last Five Years." It is about a breakup between a young couple. Although Boy #3 and I were not together for fives years and we were not married like Jaime and Kathy in the film, there is a song that explains exactly how I am feeling. In the movie, Anna Kendrick belts out her pain with "Still Hurting." If you watch the movie (available on Netflix) or YouTube the song, then you can understand how I am feeling. It has been two months and I am still hurting.

Thankful Thursday Part I

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.)

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.

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.

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.