Search

New Reality

Hello! It's been a while since I've written. Struggling with chronic illness can easily make you lose focus on things around you. I definitely struggle with that issue. It seems that I am only continuing to become more burnt out as time passes. Maybe it just gets harder the longer I am on dialysis. With COVID the issue has only gotten worse. It took me a few weeks to take care of a toll bill. I wish I had better advice for how to overcome this but I am not quite there myself so unfortunately there's not much I can offer from personal experience. You can always try asking those around you to hold you accountable, but that will probably end in annoyance and frustration. Sometimes there's no easy answer! I want to be as responsible and ambitious as certain others but it can be very difficult. With chronic illness it seems like there's always something new to worry about. Since COVID started I've been to the hospital four times. The first time was in May for peritonitis. I woke up on a Sunday feeling not quite right. Throughout the day it got worse and I eventually went to the hospital for a few days. Strangely, once the infection was cleared I felt the best that I had in a couple of years. Not too long after I was out of the hospital I suffered from a strange bout of tachycardia and an inability to be active. This eventually resolved itself and I was able to function at a fairly normal level. The second time I went to the hospital it was because I had a fever and breathing pain. It turned out to be nothing but during these times you can never be too sure. We blamed it on the leek soup my sister had made, claiming that the breathing pain was gas pain. I was happy to be quickly out of the hospital. The third time I ended up there was the most exciting time. So many things happened. I got a phone call in the middle of the night the day after a major holiday telling me that a kidney was available for me! I freaked out a little and then showered and got my things together. I made it to the hospital a little while later and by 8:30am I was in surgery. (From what I remember) I woke up and I felt great! This was so unbelievable! The next day I had to go back into surgery because there was a hematoma. After that surgery I still felt ok. I was feeling super positive and cheery and sending out positive messages to my friends. I was ready to start this new chapter. After a few days I ended up in surgery again because of the bleeding. I had been doing plasmapharesis for the new transplant and this may not have helped the issue. After the third surgery I was feeling pretty uncertain about what direction this would go in. My blood was super thin at this point and my blood pressure was quite low. They kept trying to thicken the blood. It also seemed like I was having quite a few blood transfusions per day. So many different tubes going in so many different places. There ended up being a fourth surgery not too long after the third. The day before the surgery I woke up feeling pretty normal. It gave me a short-lived feeling of hope and positivity. At some point during the day my lower body started experiencing some type of contractions. It was mainly in my legs and the area around my incision. I couldn't stop them from happening no matter how much I tried to relax. The longer it went on for the more the pain started to grow. Eventually they realized that my magnesium was low and gave me some through an IV. Looking back I'm not sure if the trembling/contractions were from the magnesium or from the bleeding. My left leg swelled and the pain began to increase endlessly. They couldn't give me a decent dose of pain medication because my blood pressure was too low. That was the worst pain I ever experienced in my life and I'm glad that it's just a distant memory. After what felt like years, (when you're trying to be patient, cool and calm while in pain, yikes) they got me ready to go to the OR. At this point I was begging to be put under and I was in quite a disgusting state. I had been on continuous dialysis that day and things had gotten a little unhygienic (don't wanna TMI here but I'm sure you can imagine). My heart rate was probably 145 and I was freaking out a little. When I made it to the OR I was struggling to slow down my breathing when they put the mask over my face and I felt like I was being suffocated. Luckily the anesthetist knew the situation was urgent and helped a girl out. But the struggle doesn't end just yet! After this surgery I was intubated and on propofol for a couple of days. Let's just say my hospital room felt way larger than it was. I also sent some strange selfies and text messages to all the people that I was talking to. Eventually I got out of the propofol haze and came back to reality. Things were somewhat better at this point. My incision was oozing madly though and would be for a few weeks. I had two drains and left the hospital with one. I also left the hospital with some type of bug because I had a fever, a cough and everything tasted weird. I got tested for covid three times while in the hospital and they all came out negative so at least it didn't seem to be that. As time passed I started to feel much better! I had to go back to hemodialysis but it hasn't been so bad. I recently went to the hospital again to have a tube replaced. It was a very short and fairly peaceful visit. It may have somewhat helped me overcome my new hospital anxiety. After my three weeks in the hospital I felt a lot more nervous about procedures and surgeries. When I was in the hospital the other day I started crying right before the procedure was about to start. Trauma! This kind of reaction is very unusual for me! I usually was able to stand strong in the face of surgeries/procedures. In the chronic illness world a lot of shit happens, but you need to keep moving forward otherwise it will become very hard to function. This past year has been very weird but somehow we made it through so we should all congratulate ourselves. It's very easy for things to go wrong. Sometimes we have to remember to be grateful for all the things and people around us. In brighter and more regular news, I bought myself a kindle two days ago! I meant to buy myself one for Christmas but things have been a little hectic lately. Things are mostly normal now except that I need to really work on my mental health. Hope everyone is staying happy and healthy during these rough times!

7 views2 comments

Recent Posts

See All

How often we forget

How often we forget what life was like before How often we forget that life before illness existed How often we forget that this is not everyone's normal How often we forget how strong we are How ofte

Questioning My Knowledge

“You’re using technical terms. Why? Explain it as if you’re explaining it to a family member. ” My Neurologist, after asking me what my symptoms are and what diagnosis I already have for my brain. I w

Weight Fluctuations

"You don't weigh 300 pounds, we can't help you with medications because you don't weight enough." "Well I think your problems would be solved if you lost about twenty pounds. I can't really think of h