It has become really difficult to not become depressed during this whole thing. It’s only been 57 days, not 65 as formerly stated (prednisone makes my math skills real bad, I can’t hold onto more than two things in my head at once) but even if you had a cold for 57 days, you’d be pretty bummed out about it. Just think about traffic! You only sit in traffic for like 20 minutes and I bet you become a beast of a person… when really, traffic does not have that much of an impact on your actual life. I’m sort of justified. Imagine staying home from work/school for 57 days. Not drinking, not doing anything super fun because you don’t want to bruise. And then you spend like 2-6 hours in a doctors office multiple times per week. It gets pretty bummy. But today I was sort of in a better mood because my platelets were 37k which is pretty low for me but high enough that I am not worried about dying or going to the hospital and I was able to finish my last dose (4/4) of Rituxan! Which means my body might start behaving in about two weeks or so. Might. If it works, which it only does in 40% of cases, but maybe I will get lucky FOR ONCE.
ITP is not the worst thing that has happened to me. Don’t get me wrong, it’s pretty terrible, but no where near the most painful or agonizing. It’s just boring and torturous. But I am lucky, and sometimes I just have to try extra hard to remind myself of that. So now, I bring you a list of the positives.
1. My family- they may have caused me AN ENORMOUS amount of stress (and still do) but they’re awesome and I’m so lucky they’re supporting my ass at 27, almost 28 years old. I’m so lucky to live in this nice house which all this delicious food that I don’t have to pay for, with all these pets, and this family who is just so funny. And even though my sister can be a huge bitch she has been really nice since I’ve been sick and we hung out like all day yesterday and did crafts which was super fun. We have some serious craft skillz.
2. Timing- I got REALLY lucky with the timing of this whole thing. I only decided to move back to NY in May, basically the week I graduated, and back in with my parents to save some money for 6 months and pay off my loans. This ITP saga would have been HORRIBLE if I were still living alone trying to support myself. I’m lucky my parents are able to house me with minimal financial burden. And I’m lucky I’m still on their health insurance until January (…..eek. Have to figure that out). I literally got sick THE DAY I was moving back to NY, not a moment sooner or late. My parents swooped down in the middle of the night and finished cleaning my apartment for me while I was stuck in the hospital.
3. It’s not cancer. I really thought I had leukemia prior to diagnosis because the bruises were out of control, but my bone marrow is perfectly functional and that’s not the problem. While I am thrombocytopenic which can be pretty dangerous/fatal, and I am immune-compromised, I don’t have to worry about cancer possibly spreading all over my body and while I am getting chemo used for leukemia/lymphoma, it’s pretty mild, I get to do it outpatient, and I am not losing my hair. Meanwhile, one of the reasons I felt like I HAD to move home was because I was worried about the health of TWO close family members. We were worried about one of them possibly having cancer again, and we just found out that she does two days ago (seriously- talk about kicking a girl when she’s down), so I’m glad that I’m home and I get to spend time with her. We can both use it.
4. Finances, schminances- Money to me right now seems like such a joke. I feel very minimal stress about it just because it is so out of my control. But again I am SO LUCKY I’m not paying rent at the moment (I was going to pay my parents rent but now I just can’t afford it, and that’s ok), and when I lived in VA I was paying $1200 a month in rent before utilities and expenses FOR A STUDIO APARTMENT. But the good thing is that I can defer my loans (even though that sucks that I can’t even pay the interest), and the amount of credit card debt I do have from Milo’s RIDICULOUS veterinary bills I had already done a balance transfer on and I don’t have to worry about them too much for another 8 months (and then I’ll probably just transfer it again! because really who knows what the hell is going on with me). And shortly I’ll be eligible for SSI Disability, which is nice because then maybe I can even pay my own weekly/bi-weekly $40 co-pays. My mom has been paying for them because uhm, she gave birth to me and she would prefer if I not die. Also, my insurance covered my extremely long, out of state, hospital stay which was something that was really stressing me out. I didn’t get the bill for it yet but all I care is that they covered it. Whatever bill they send me I will just chuckle at and toss in a pile for a few months like I do with all of my other bills at this point.
5. Food. If you’re gonna be sick and you’re gonna be on high dose prednisone and gain 26lbs in 8 weeks, you might as well do it in NY because the food is AMAZING. Not only do I get to cook in our giant kitchen all the time (I really missed cooking), the Italian fare around here is to die for. I wouldn’t even eat pizza or bagels out of state and I’ve never seen rainbow cookies in the south. I’m allergic to rainbow cookies because of the almond extract but being that I’m on prednisone I’ve been throwing them back like no one’s business because my allergies (except to my own platelets) are really minimal for the first time ever. THANK GOD. Also- you pretty much have two times in life where you can just be a complete glutton and no one should give you shit for it- and that is a) when you’re pregnant…. and b) when you’re really sick and on medication that makes you fat. B for the win!!
6. Clothes- I haven’t been able to buy new clothes in a really long time because I’ve been incredibly broke for three years- but my SISTER’s closet is so full it looks like it threw up on itself and she works in fashion so she has good stuff. She also has a bigger butt than me and now I fit in her pants. WINNER WINNER CHICKEN DINNER. And my mom has an entire room for a closet, which doesn’t even fit all of her clothes, and now that I’m fat I just borrow her tops because they fit me better than all of my clothes do. NOT that I even really ever have to wear clothes because I never leave the house and all I do is sleep. WINNING ALL AROUND.
7. Aminamals- We have many. And they help so much. I never feel completely alone. I am literally like the Pied Piper and they follow me everywhere. Khloe Katdashian is like my shadow and doesn’t even let me pee in peace. And I’m so lucky that Milo is still alive considering he almost kicked it a year ago. Not only is it nice to have them around, occasionally my parents go out or go away and they give me something to be responsible for, so I feel like I have a reason to get up, like someone needs me. Because taking care of people (and furry people) is my jam and I would be completely lost without the ability to do so. I’ve even been visiting OTHER people in the hospital and it makes me feel way less sorry for myself. When I can help people, I just feel better.
8. My very expensive BSN degree- Thank you god this all happened to me after nursing school because it’s really complicated and I understand it the best anyone can possibly understand it. Doctors really don’t explain anything to you very well and I have done a lot of my own research on it to explore my treatment options, which is really important because a lot of them are very toxic/dangerous and the benefits and the risks of each are really varied and sometimes permanent. I sit in a lot of waiting rooms and I see a lot of other patients when I get my IV treatments at the oncology clinic and they don’t understand sh*t most of the time. They don’t understand physiology and what affects what or what medications do what and why… I heard some woman today saying her husband has a heart problem and needs to be on blood thinners…… meanwhile his platelets were 30k. She completely has no idea that platelets ARE THE THINGS THAT MAKE CLOTS and don’t worry about your husband having a stroke because it’s not gonna happen at 30k. And then another man was yelling at the nurse because his wife’s blood pressure was up and the nurse was like “yeah, because she was in the hospital and she got a lot of fluids….. when you get fluids, your blood pressure goes up.” It just turns my stomach knowing that the majority of America does not understand any of their medical care. My parents don’t understand mine, but that’s perfectly ok because I do and I’m the one in charge here. They just pay the billz. My dad was honestly about to go to the nurse’s station in the hospital one night and try to pay someone off for platelets because I was supposed to be getting them but they were taking a long time. I was like “Dad. This is a cardiac floor. People are actively dying out there. They are probably busy trying to stabilize someone. The platelets can wait.” They just have no idea.
9. Sickly swag- obviously when I was in the hospital people sent a ton of flowers and stuff which was great because it made my room look really fun, but occasionally I still get things popping up at the house even though I’ve been sick for two months. Last week I got a really beautiful basket of flowers and an edible arrangement from my neighbors. Edible arrangements are AMAZING, especially if they involve chocolate. Also the people I babysat for have been sending me pictures via texts and cards and pictures of their kids in the mail (snail mail! i love snail mail!) and it always just perks me up even if I’m having the worst day just because you know someone took the time to think about you, actually write out your address, plop a stamp on there, and bring it to a mailbox which sometimes can feel like such a huge life obstacle if you’re a busy person. A for effort. And then I hang them up on my bulletin boards of happiness and get warm fuzzies when I look at them.
…and my mom gets me cannolis on monday after chemo. YEAH BUDDY.
10. Absence of guilt- I can take a nap and for the first time in my life I don’t feel a single ounce of guilt or nagging sensation that I should be doing something else, because I have nothing else to be doing. And no one bothers me because I am legitimately sick and my body is killing itself on the inside and I have the papers to prove it and I CAN SLEEP WHENEVER I WANT. Plus I have really awesome sheets. (Well, unless I can’t sleep like right now at 3:30am from the steroids, …erroneous). I also don’t feel guilty when I go use up my massage envy credits because if my platelets are high enough that I can have someone rub all this effing fluid off my camelback buffalo hump THANK YOU JESUS CARPE DIEM. Unfortunately my platelets are not high enough now to get a massage but I think I’m going to get a facial instead, especially since I have more acne right now than I have ever had in my entire life combined. #prednisoneproblems. But even that doesn’t bother me that much. In the grand scheme of things, acne is the least of my problems. And I promise you, when you look at my huge face, that is not the first thing you are looking at.
11. People have been really nice. People I have even only been acquaintances with or like went to high school with have randomly popped out of no where to send me a note saying that they’re there to help if I need anything and that it must be so scary and they’re rooting for me. Or even if I want to get out of my house and do anything they’d love to hang out with me. So nice. Never underestimate a random act of kindness. Some of my friends even went out and donated blood when they heard about all of this nonsense. That was INCREDIBLY touching. And of course my close friends have been amazing (mostly) too. I know it must be hard for them because the closer I am to them the more I bitch to them but no one has really told me to shut the eff up yet. It’s hard because it’s so frustrating on a daily basis but I’m going to make more of an effort to keep it in my head because I love those people and I don’t want to push them away with my growing curmudgeoningness. I don’t care if that’s not a real word, it is now.
12. America. Thank god for America and thank god I was born here. As corrupt and backwards as it can be sometimes, thank god we have adequate (mostly) health care and thank god I have health insurance. Because if I had come down with this nonsense somewhere like Africa- do you think I’d be getting chemo and IVIG and weekly platelet counts and fluids and steroids and SAFE platelet transfusions? Oh hellz to the no. I can’t tell you how scary it is to lay in a hospital bed and know that you need a blood transfusion (/blood products/platelets). Like your body is failing SO HARD that if you do not get blood that came from someone else, you will likely die. And to know that they have that blood on hand and you will have it in less than 20 minutes and it will be blood that matches yours and screened for all these diseases and probably will not give you HIV is an amazing thing. (GO ME for picking a hospital with a blood bank, because at the hospital I interned at…. they didn’t have one.) Do you know how many people in Africa with Ebola are not getting fluids/food/medication/blood transfusions/medical care right now? Thousands. People don’t even have water in this world. And here I am getting magic liquid science in bags once a week that is safe and sterile and hopefully going to trick my body into cutting this shit out so I can get back to my little whitebread first world life and career of choice, on route to which I have attained not one, but TWO college degrees. I am very lucky, even if I am physiologically unstable.
13. I will get through this. I’ve gotten through everything else in my life as harrowing as it may have been and I’m still here. I may get through it in a way that means ITP never goes away and I am on medication for the rest of my life and chasing remission for years and end up in the hospital every now and again, but it is manageable. I may end up taking out my spleen and not ever being able to work in a hospital as a nurse like I wanted, but it’s ok. And if it means I have to go and marry some old rich dude just to make my life easier for myself, so be it. I’ll find joy in something else. And if I can’t ride horses ever again because my platelets are never high enough, it’s ok, I’ll just get a mini horse.
14. I wake up in the morning (ok, in the mornings and several times throughout the day). In my bed. Not on a floor, not in a hospital bed, not in a casket. I wake up alone, and I wake up puffy, but I wake up in a pretty cozy house, I wake up with (most of) my faculties and two arms and legs that work, in a safe place. I came very , VERY close to not being able to wake up anymore, and I will not forget that.
Tagged: autoimmune disease, cancer, cannolis, chemo, chronic illnes, ebola, family, fat, food, grateful, happiness, healthcare, immune thrombocytopenia, itp, life, musings, new york, pets, pregnant, spoonie, thankful, the positives
