The Beginning

Sometimes when things seem like they’re coming together for me, I often find myself feeling more confused and depressed. I’m not entirely sure why this is. I can only imagine it’s because deep down, I’m not used to good things happening for me and it’s hard for me to believe that they are things that I deserve. I don’t know if there is a name for this or how to combat feeling this way.

With that said, I start my new job with Progressive in about a week on May 2nd. I don’t feel nervous about it because I’ve worked in insurance before and I’m generally pretty happy that it will be entirely work from home. The first three months will be training, so it’s going to be nice to ease into working full time again. Once I found out that I got the job, I started looking for apartments for myself so I could start to fully re-build my life and get back on my feet again. I ended up finding one, and with the help of my family, I paid the deposit and signed the lease for it this week. I officially will be moving back to Providence on June 1st. While I’m obviously really excited about this, it honestly doesn’t even seem real. I haven’t had dreams and couldn’t imagine a future for myself for so long, and even though I am very clearly taking the tangible steps needed to forge a good future for myself, I almost can’t believe that it’s going to happen. Being sick has scarred me in a sense to not really have hope or believe things will happen for me until they actually do happen, because things have ended up going wrong so often and left me feeling devastated in the end. I’m trying to get used to the feeling of having hope and not automatically thinking that things are going to go wrong for me, but it’s easier said than done.

I’m trying to give myself the time and space needed to start feeling comfortable with believing that I do deserve good things. I’ve been trying to practice daily affirmations and I hope that eventually it helps, but right now it still almost feels silly telling myself that I am worthy and deserve good things. I have to get used to feeling hopeful and positive about my life, which I know will take some time. I’ve been through a lot since I started dialysis and experienced a lot of trauma that I need to accept and overcome. But at the end of the day, I know that I am worthy, and I do deserve good things to happen for me. This is just the beginning.

Patience

Depression is really weird in the sense that, one moment you can feel like you’re making a lot of progress and then the next, you feel like you’re back at square one.

I had a pretty productive week last week and made some progress in healing and trying to re-build my life. I had my first real therapy appointment and cried pretty much the whole time, but it felt really good getting a lot of my feelings out and having someone understand that the struggles that come with chronic illness greatly compound feelings of anxiety and depression. I got to visit Britt and Rylynn again, and even spent time with my sister Jenn and my niece and nephew, which always makes me feel better. I interviewed with Progressive and have a second interview scheduled for later this week. I went to a foot doctor to get some answers about the severe ankle pain I’ve been having since transplant, which the doctor believes is just coincidental and unrelated to transplant (I basically just have really weird shaped feet and have never worn the right supports for them which is now causing issues). I finally made an eye appointment for the first time in a few years and even made an appointment to get my hair cut to try and combat some of this hair loss. My progress is small, but I’m still making it.

Despite this, I still find myself getting overwhelmed about where I am in life currently. I feel impatient with how stagnant things feel. I feel envious watching my peers building and living their lives around me, while I’m still here just waiting for mine to begin again. It’s hard not to compare where I am in life with where other people my age are. But at the end of the day, I know that most people my age haven’t had to deal with anywhere near the amount of struggles that I’ve dealt with over this past half of a decade. I know that I’ll get to where I need to be eventually and that I just have to try to remain positive and patient during this process. This may feel like my lowest low, but the next chapter of my life very much could be the greatest chapter yet.

The Reality of Recovery

This is a really hard post for me to make, but I have to make it.

I suffer from extreme anxiety and depression. It’s gotten much worse over these past 6 months or so due to a lot of really big, not so great life changes that have been happening in my life. I ended up moving in with my brother temporarily in Massachusetts, and now I’m living with my Grandma. That, on top of getting a brand new kidney in January, has been really overwhelming for me and a lot to process.

My transplant experience hasn’t been the happy, easy life that I thought it was going to be. First, I had the surgery alone and wasn’t allowed any visitors during my stay because I contracted COVID. Being completely alone for something that major is scary, and I can’t say I didn’t think that if anything went wrong, there was the possibility of me dying there alone. I was in so much pain at the hospital and felt so overwhelmed dealing with everything there by myself. I was left in my room a lot, waiting for nurses to come for over an hour sometimes because they were short-staffed and I was in a COVID room, which meant they had to get in and out of all of the COVID gear before coming to see me. I was there for 6 days, and honestly, I feel like I buried most of my memory of my time there deep down because it felt so traumatic.

Recovery has been all over the place for me. The first week home I was so weak and in a lot more pain than I imagined. The second week, I started having major heart palpitations every time I got up and even so much as walked to the bathroom. Eventually that got better. I lost about 20 lbs that first month, but started gaining weight again and am feeling a little stronger every day. I’ve had major side effects from the medications, like tremors, headaches, and major mood swings. I’ve lost and am still losing most of my hair. Now I have a lot of joint pain in my ankles and knees which has made walking more difficult. I’m trying my best not to get discouraged, but it’s hard.

I’ve always suffered from anxiety and depression, but I have always told myself it’s not as bad as what others struggle with, and I have always kept my true feelings inside because I don’t want the people closest to me to worry about me. Lately, I’ve just been at my lowest low. Healing after a transplant surgery is a major feat in itself, and I not only have to do that, but I also have to rebuild my entire life from scratch entirely on my own. It’s hard not to be envious of the people I see who recovered from surgery with an amazing support system, because having someone there you know has your back fully and that you can rely on makes rebuilding your life seem that much more possible.

People tell me that I should feel positive because the possibilities for my life are endless, but they don’t feel endless. I feel like the process of starting over completely from scratch is daunting and almost seems impossible at this point. I no longer feel like I’m passionate about anything, so trying to figure out what I want to do with my life is overwhelming. I just feel trapped in a place where I’m constantly paralyzed by the idea of how I thought my life was going to turn out to be, and the actual reality of it all. I don’t feel inspired by anything lately. I just feel deeply sad and deeply lonely.

I’ve been getting through each day minute by minute, hour by hour, just desperately trying to do things, anything, to feel some sort of relief. I feel like the joy for life that I once had is buried so deep now that I don’t even really remember what being happy feels like. I just feel numb and like I’m going through the motions of life, but not actually living it.

I wish I could say I’m progressing in life and working towards my goals, but really, I’ve just been trying to survive. I’m trying to tell myself that I do have worth, and that I don’t need anyone else to help me achieve happiness and success. I’m not sure that I actually believe that, but I need to, because I really have no other choice.

Midnight Drive

Tonight, right as I was about to hook up to my dialysis machine, Brandon asked if I wanted to go for a drive. It was almost midnight, but I wanted to be spontaneous and go anyway. I quickly got bundled up and he pulled the car up front for me outside. I was wearing my waterproof sneakers that I get really excited to wear outside now because there is snow on the ground. I ended up slipping and banging my knee on the ground, but I got right back up immediately and hopped in the car. We slowly drove down our street and around the corner. As we turned, we noticed a deer just standing in the roadway. She was not startled by us and slowly strolled about in the snow in front of us. She just stood there in the snow as Christmas lights nearby reflected off of the ground. The peace and serenity I felt is something I didn’t want to forget. Despite the rough start to our little adventure, it was almost as if the deer was there to remind me that in the end, everything will be okay. I’m so glad that I went.

A Rant- 5/23/20

One thing I’ve noticed being chronically ill, is when your whole life starts to change drastically because of your illness, you immediately start to realize what’s really important in life. When you watch everyone around you continue to live their lives while yours is seemingly on pause, you hope for nothing more than these same people to realize what’s important in life, like their health and their relationships. Before the coronavirus, society put all of its importance into people working. Our identities essentially formed around our occupations. People thought they were their jobs. And then the coronavirus happened.

Now people were forced to slow down and re-evaluate their priorities. Some people realized quickly what was important, but other still felt tied to the identities they created for themselves with their occupations and struggled to really find any meaning in life beyond that. People were willing to risk their lives in order to make really rich corporations even more profit because they “couldn’t stay home.” They didn’t know what to do with themselves if they weren’t working. Some people didn’t struggle with that, but were faced with different realizations. Being forced to be around your family/significant other all the time highlighted the deep flaws that were hidden in relationships by all parties always being “busy.” It was easy to ignore these things when they didn’t have to spend any time really thinking about them. And instead of realizing that and strengthening these relationships, people are crying for opportunities to leave their homes, even if it isn’t safe to do so yet, so they can fill their lives up with “busy” again.

I probably know better than most the toll it takes on your mental health being home alone all the time. For me, I have spent most of my time home as the people and world around me continued to turn. Nobody slowed down to check in. Instead, I was supposed to be understanding of THEM and the fact that they were just so busy and didn’t have any time outside of their perfectly curated schedules to fit in a quick visit, or what have you. Now, these same people are loudly complaining about how detrimental quarantine has been to their mental health and how they can’t wait for things to open up and go back to normal. Wearing a mask is hard FOR THEM so they think they shouldn’t have to wear one, meanwhile nurses and other medical professionals have cuts on their faces from the masks they have to wear treating covid patients. The entitlement people are loudly broadcasting is sickening.

On another note, because I’m not a mother, I get constant comments from mothers saying things like “must be nice” when I mention in conversation if I did anything like laid out in the sun, watched Netflix, etc. I had my ovaries taken out a couple years ago not by choice and cannot have children, and they (assumingly) had their children by choice. Sure, it’s nice relaxing, but I’m sure it’s even better being an actual mother. It’s mind blowing to me that people are complaining about spending time with their children instead of making the most of this unprecedented time with them.

I have gone many months not doing things many people take for granted. Years, even. I couldn’t shower for almost two years and had to give myself makeshift spongebaths. Now, I can shower, but I have to wear a lanyard around my neck to hold my stomach catheter so it doesn’t tug and cause an injury. I can’t just dry off and relax after showering either, I have to make sure to clean and bandage my catheter site. I can’t just climb in bed when I’m tired, I have to set up my dialysis machine and then hook up to it for 9 hours every night. I can’t just wake up and go in the mornings because I have to unhook from dialysis and clean everything up. Then I have to make sure I take all of medications, which in itself is frustrating. Imagine having to take lots of medicine in order to stay alive every single day? I’ve stayed home from many family and friend parties because of being chronically ill. I am constantly worrying about how much potassium/phosphorous/sodium/fluid I’ve consumed because having too much of these things can literally kill me. I can’t ever just live in the moment because I am constantly worrying about these things.

With all of that said, these social media posts I’m seeing from people acting like them not being able to dye their hair or go out to eat for two months was the worst thing that could happen to them are literally insulting and nauseating. It’s obvious these people lack perspective. 100k+ people have died from the coronavirus in the United States. Imagine your biggest issue right now being not going out to eat? Their lives seemingly will just go “back to normal” while I’ll still be over here, along with every other chronically ill person, living my life like I were quarantined. We’ll be living this way long after the coronavirus is over, and everyone will go back to living their lives worrying about all of the shit that doesn’t matter instead of prioritizing all of the shit that does.

I was really hopeful at the beginning of the pandemic that this time would wake people up. That instead of begging to go back to work, people would be demanding our government provide us with the resources we deserve right now. I hoped that people would realize how fucked up it is to live in a country that doesn’t guarantee us healthcare, especially now during the pandemic. I hoped people would prioritize their relationships and bonds would become deeper and stronger. Unfortunately, people are still as complacent and selfish as ever.