Recovering from my Recovery

Hi Y’all , again I’m sorry I haven’t posted in a while but Here I am. This is a last minute, written in ten minutes update. I’m working on a more extensive update but I just wanted to get these things off of my chest right now. So stay tuned! And as always thanks for reading.

I’m back in the hospital again. Not life-threateningly thankfully. A flare-up of GVHD ( Graft vs Host Disease ) is almost inevitable for bone marrow transplant patients. What sucks is that it comes on like a storm and you can’t stop it. I hate throwing up with a passion, I think I’ve thrown up enough to last me a lifetime. It took me a long time to tell my parents that I was feeling unwell because I was doing so well up until then. I didn’t want to feel like a burden on my parents and sister as they had just gotten back to “regular life ” I get sad every time they have to get my medicine for me or have to get my water. I’m supposed to be more and more independent as time goes by, so why am I asking my family to do stuff for me? I feel bossy and selfish every time they have to do something for me. But at the same time, I still struggle to get up and do the mundane things that you may think are easy. They lowered my steroids and I couldn’t have been happier, but with that. comes the pending withdrawals. They make me feel depressed, and anxious and make me feel funny. It’s like a two-sided coin that changes from happiness to dread. I just want to feel good for one day, to be able to enjoy my day without thinking I’m going to throw up or get sent to the hospital. When I got admitted to this most current stay, I was in agony for about 3 hours in the emergency room. Fighting the urge to throw up and pass out due to the pain. Usually, Dilaudid can help the pain go away but unfortunately, it didn’t help me at all which scared me to no end. It took two days before I could find relief and even that wasn’t enough. Pain medication scares me, they always have. I feel horrible having to take them because it makes me feel like a druggy. I despise them so much that I would rather be in pain sometimes than take them. It would be my worst fear for people to think I am a drug addict or want the drugs for something other than the pain. Weaning off of them is also hell. The withdrawals make me feel weak and like the life got drained out of me. Thankfully the doctors are usually able to settle my mind about such things stating that I have a good reason for needing the pain meds. I recently had an MRI to check how my back fractures were doing, they’re still there yay! As a bonus, they found two new blood clots in my arms. They said that I had lost some height due to the compression fractures, I mean c’mon I’ve been through hell and back, AND now I’m shorter! God has a cruel way of showing himself. I thought I was doing good in my recovery until this most recent stay, it feels like a setback. I now have higher steroids and more medications to take. What do people always say? One step forward two steps back? Well, this feels like half a step forward and five steps back. I know recovery isn’t linear but it’s hard to internalize that. Going back out into society is my main problem and I recently have wanted to be more independent since my family is either at their jobs or at school. I want a service dog. Now you’re thinking, Sydney you’re already recovering from the bone marrow transplant why would you need a service dog? Well, let’s just say a service dog could help me become more independent in a safe capacity. I have frequent panic and anxiety attacks that usually happen at the most inopportune times and mostly in a public setting. I have a hard time with mobility, movement, and bending over to pick up things. I also would like a service dog that could alert my parents or others if I need help or if I’m having a flare-up. I also have bad memory loss so I sometimes forget important things such as medicines and a service dog could help me with such things.There are a lot more beneficial traits that a service dog has but the only problem is the cost. A service dog would help with my quality of life and help me healthily reenter society and a way my parents would like due to them being concerned all the time about me.I have looked at non-profits and multiple companies that could help but it is so expensive and rightfully so. These trained dogs could cost around 50,000 dollars. I want to fundraise but I feel like I’ve already asked enough from everyone, I feel greedy asking for more money when it isn’t a necessity. The other option is to buy a puppy and then go through a service dog training program which is still expensive. With my birthday coming up I’d love a white or black standard poodle puppy to train to be my service dog it seems like a pipe dream, but I think it would be a perfect gift. I only have school once a week so the other days I could keep myself busy by going to those trainings with my dog. It feels like a pipe dream unfortunately but if anyone wants to sneakily text my parents to get me a poodle puppy I’d be eternally grateful.

With all my recovery the hardest thing has been my body image and fertility problems. I’ve struggled with how I’ve looked since I was a teenager. I unfortunately think it’s something all girls deal with. When I look back on how I looked in the past years I feel sad that I hated how I looked. I should’ve appreciated it while I had it, again a common thing I think women deal with. I look at myself and I see progress from months earlier but I still am weirded out by how I look. I look at the extra skin on my stomach and the fat on my face and I break down. I just want to look pretty again, like how I looked when I THOUGHT I looked fat. I understand the hardships of people who can’t change the way they look, and how draining it could be day in and day out. I dread shopping for clothes because I don’t know whether to shop for how I look now or how I will look later. I don’t fit my cute clothes like I used to. Trying on items seems to be a stab in the gut every single time. Seeing my belly poke out and my circular face peeking out. Everyone says it will get better and that I’ll return to how I looked and I agree with them, but I want it now. I’m scared by the time I do I will miss my “golden age “. I don’t want to be 21 and look like this. I’m also scared that I will need a tummy tuck in the future due to my extra skin, something I was hoping I wouldn’t have to do until after I had kids. Another thing that compels me is the whole fertility situation. Kids always have weird fears like elevators spiders or dogs. Mine has always been the possibility of not having kids. A fear that has unfortunately become a reality as of late. I’m horrified at the fact that I might not have kids. I know you can always adopt but I don’t know if that’s truly for me. People who adopt me have a strength that I can only hope to achieve. But I want to be able to create something with the person I love, to raise a kid that’s just like me and their father. I know I’m still young but when you have to do IVF as a 19-year-old, I think it’s common to think of those things. I think my purpose in life is to be kind to others and be a loving mother. Whenever I hear a baby cry my heart breaks. While that parent may be frustrated and angry with their kid, I would do anything to be able to hear my baby cry, to hold something as delicate as a baby. I got a few eggs in the retrieval but it’s never confirmed that you will have a viable egg. I see babies all around and get jealous to the point of tears, like I am grieving the children that I haven’t even had yet. I always want to stay positive so hey maybe I will have kids one day, Hopefully, if there’s a God out there he will take pity on me because of the hell he or she put me through. 

On a happier note because of my free time, I’ve taken up journaling and I LOVE IT. It is so fun and creative and mind-boggling. It’s a way to express myself creatively and is time-consuming but in a good way. If anyone has scrapbooking or journaling stuff that they don’t want please send it my way because I will put it to good use. It’s been my hobby as of late and I just want to do it 24/7. If there are any tips or tricks that you guys have again let me know. Besides that thank you for listening to my rambles and feelings oh and don’t forget to tell my parents about the poodle puppy for my birthday I would appreciate it + any journaling/ craft stuff you don’t want!

Thank you and I love you all and hope you have a good first couple of months of 2024!