Join me for the multi-dimensional struggle of Alyssa Hates ITP. Because we have nothing to talk about ever, except ITP. Because we have no life. No life at all.
I’ve been stuck in sort of a “woe is me” rut recently, and to anyone on the outside my life really isn’t that bad so I feel like people are probably judging me. I don’t think anyone will ever really get it, unless you’ve been in these shoes or a similar brand, but I’m going to try and explain. Both because it may be enlightening in your view of anyone who struggles with a chronic illness AND because I know someday I will look back on this and want to read it (in the rare instance that this EVER goes away).
Keeping up with the Joneses- First of all, I have always been a competitive person, unintentionally. I was always one of the smartest kids in my class growing up and a lot of things always came very easy to me (not sports). It wasn’t until after college (the first time) that people started to surpass me in what I saw as success, careers, relationships, families, houses, etc…. and by the time I finished my second degree everyone was WAYYYY ahead of me. Pile on student loans and I am light years behind. But I had a plan! I was going to live with my parents for six months, chip away at those loans, and get my life together. Except everything came to a dead halt before I even got back to New York…. and now I am perpetually stunted with no clue of what will happen next. I feel like an utter life failure, and I tried so so so so so hard. I can’t tell you how many days over the last three years I went on like an hour or two of sleep between school and trying to work at the same time. But I powered through it. And it seems like none of it has paid off because now I am stuck with a heaping pile of debt I have no way of paying off. I went from being this very independent, ambitious, smart person…. to a 27 year old loser with no job who lives with her parents and can’t even pay her own medical bills. I can’t even babysit because of the germs. So it is hard for me to go on Facebook and see everyone so happy. It’s not that I am jealous (although my former roommate honestly patented a new cure for Malaria (don’t worry I still love you, you bitch) and I was just like…. “Are you serious? COULD YOU NOT MAKE ME LOOK ANY WORSE.” My friends are all brilliant and very accomplished) So for a good week I deactivated my account…. which brings me to my next dilemma-
Honestly WHO GETS THIS?! Who gets ITP? It is really hard not knowing anyone else who has this. You don’t realize how many things in life you consult people about until you are the only person you know experiencing something super new and confusing. I have no one to talk to about this. No one even knows what this is, let alone have they been through it. So I had to reactivate my facebook because one of the only things keeping me sane throughout this is an ITP facebook group where people know what I am talking about and I can ask them questions about their treatments and symptoms. You have to understand that SEVERE ITP is incredibly rare (I have a severe and very refractory case)… and even my Heme/Onc practice only has 4 patients IN THE WHOLE PRACTICE who get treatment there. So really, not even my doctor knows what the hell she is talking about, nor is she good at answering any questions I have. It makes a huge difference to have someone to relate to. So I’m sorry if I’m still being super impulsive and posting randomly, but I need the damn facebook so I can talk to people and not lose my mind.
I live in fear. The lower my platelets drop (they have been pretty low for about three weeks now) the more panicky I get. I realized one day when I looked at my hands and saw little spots and my heart started racing just how afraid I am of this. It was glitter, not pettechiae, but there is not one ounce of me that wants to be stuck in a hospital bed needing platelets again, afraid that my brain is going to spontaneously bleed. I really like my brain. My brain is my favorite part of me. I worked really hard for everything that is in there, not to mention, if I were to have a brain bleed- it would be fatal. There is no saving someone with ITP in that situation. I am afraid to die because my life hasn’t been amazing yet. I put in all the work so that it could one day be great, and I haven’t gotten there yet. I’m not ready to die. It wears on you, the worrying. Also, I have a medical condition (genetic) called Ehlers Danlos Syndrome which means that my body doesn’t make collagen correctly, so my connective tissue is weaker, meaning I am generally more fragile all over. My sister mocks me because “everything is wrong with me.” But unfortunately, everything from your bones to your skin and everything in between involves connective tissue, so I just break all over, all the time. Not only does this mean that I have tolerated a good amount of pain from chronic dislocations and other nuisances my entire life, but now the combination of me breaking more easily plus the low platelets means I’M FREAKIN BLEEDING ALL THE TIME, and it is nerve wracking. All of the doctors in the hospital said that I had the most extensive bruising of anyone with ITP they’ve ever seen, but it’s because I normally bruise very easily from the EDS in the first place. My blood vessels just bust easier. (Not to mention the most major complication of EDS is brain aneurysm, so I’m like doubly paranoid about dying via brain explosion). I keep showing up at my Heme/Onc with purpura (bleeding) in my mouth- which is usually only typical when platelet count reaches below 20k (which is critical). But I keep turning up at 35k-40k, which we’ve decided is because I do have blood vessel involvement with my Ehlers Danlos Syndrome. Which is like sort of a good thing that I know this now- but not a good thing because I just bleed even more often.
The steroids. Pray that you never have to go on them. I’m on half the dose I was initially, but this is a REALLY LONG TIME, even for someone with ITP. In all of the studies I was reading last night, the subjects getting Rituxan were on prednisone of 10mg or lower. I can’t taper below 20mg because I suck. These things have hijacked my body and ruined it, and not just from the outside, on the inside as well. I live in this mental fog where there are things I am thinking and I just can’t pull the words out of my head, or I continually forget what I’m doing. My body and face are riddled with acne. I have this enormous and unsightly buffalo hump which is so big it is honestly preventing me from moving my head back. I get hot flashes all the time- my family yells at me daily because I sleep with the windows wide open and freeze the rest of the house. But worst of all- I’m getting insane teeth sensitivity to the point where I can’t eat any more ice cream (oh, weight gain, whatever), and my muscles are atrophying. I have noticed an extreme difference in muscle memory strength (I have always had a very strong core even though I haven’t exercised much in the last few years) and even in daily motions like holding a serving plate- my arm will shake. I look like an old woman. It is also very hard to be ugly. I mean, I still leave my house occasionally, but I am actually embarrassed now in public. Of myself. I feel bad that people have to look at me. I was never that concerned with my appearance in public but I was always pretty confident. I stopped at the mall the other day and I felt so physically good after my workout, so I had a little pep in my step, but occasionally I would catch a glance at my reflection in a mirror and it was honestly shocking every single time. My self concept is not what I see looking back at me, and that is psychologically hard, because the change happened SO drastically and SO quickly.
My plans- distant though they may have been- have changed. For the last few years I worried that I would soon get to old to have kids. “My eggs are shriveling up!” I would jest in the kitchen at the restaurant where I worked. But now, dating has taken a complete back seat to this ITP rollercoaster and the prospect of me ever having kids seems like an impossibility. First of all, all these treatments are pretty toxic and they tell you not to get pregnant for at least a year afterward. Not like I was planning on having kids next year, but the likelihood of me needing these treatments in the future…. is pretty likely. Secondly, I was already set to be a high risk pregnancy because of the EDS, now I can also add ITP to that, and pregnancy can trigger ITP, so even if I were in remission, I’m pretty sure that would set it off again. Not to mention, pregnancy is dangerous in someone with ITP because of that whole uhm, BLEEDING thing. Eff you, I’m 27, I have a uterus, and hormones, and I will worry about this in the back of my head if I want to. ALSO- who the hell knows what these treatments are doing to my eggs or whatever. If something as inane as deodorant can give you cancer, I’m sure that chemicals that have immediate crazy effects on your body aren’t all that healthy for you long term. There are no long term studies on the effects of Rituxan because it is that new. No one knows. I don’t know what I’m doing to my body with this shit (other than the steroids which have an intensely long list of long term negative consequences) but I have no choice. And I LOVE kids, so this is a sad possibility.
And lastly, I know they are trying to help, but it is annoying when people keep telling me to “Hang on! You’ll get through this!” No. You don’t get it. I will have this forever. It may actually never go away. Yes, I may get through this episode, hopefully sooner rather than later. But there will (probably, definitely) be other episodes, probably sooner than I will have hoped. ITP is a chronic condition in adults, meaning you have it forever. It’s an autoimmune disease, like lupus or MS. There is no cure, there are only treatments. I may go into remission, but it will come back. I was/am hoping for something amazing like a 5 year remission (one of the best case scenarios) after Rituxan, but I have not yet responded to Rituxan and my doctor has suggested we “move onto other things.” Translation: It’s not working. It only works in 30% of people to begin with and those responses are generally only from 3-18 months, some responses are as short as one week. THIS IS NOT GOING AWAY. I am not going to “get better.” I am going to go into remission (cross fingers) but in the back of my head I will still be afraid that one day I will wake up covered in bruises and it will be back. I will again be so exhausted I may not be able to work. I may not be able to pay my rent. I may never pay off my loans. I am now afraid to move back out of my parents house because I would have no one to fall back on. This prospect of this lasting for the rest of my life is more than daunting, it is exhausting, it is unfathomable. I had my whole life ahead of me. I haven’t even been to Europe yet! And now I would be scared to go to Europe because I’d be afraid I would crash and end up in the hospital in a foreign country getting blood that I don’t know is safe or not.
But I have to push through all that. I refuse to be a depressed person. I may have bad days, and I may be incredibly open about how much this sucks, but it’s only because I don’t want to hold it in and have it bottle up to the point where I am overwhelmed (I am overwhelmed anyway, really). There is still a huge part of me inside that thinks “I can do anything! Rawr! I’m gonna kick this shit to the curb!” and then there is the complementary part that is physically, emotionally, and mentally exhausted by it. And the rational part that knows I may just have to succumb to the idea of always being somewhat sick. I will get my life together, and I might have to live around it, and my life might never be the fairy tale (ha, I’ve never thought for a minute it would be a fairy tale, but I thought it might be nice) I’ve wanted it to be…. I would just be happier if it could be a little easier and a little less sucky. Because I’m really tired of fighting so hard for something that seems to come so easily to everyone else. I have never peed outside! I have never been to Miami or Europe or Texas. I have never been to a dude ranch. I have never been on vacation with a boyfriend, taken a couple’s photo, or had a Valentine’s Day. I was going to buy my own car! I still haven’t paid off Milo’s vet bills from last year. I just want normal life things. I just want to go to dinner and have a glass of wine. I don’t want this. I think to my self sometimes how nice it would be if I could just wake up tomorrow and have it be over and be back to the life that I knew as of August 15th, 2014. How nice it would be to just wake up and have a really normal, mediocre, bill-paying, full time working, happy hour attending, fully awake and alert adult life.
Tagged: adult life, autoimmune disease, babies, being a failure, being an adult, bills, chronic illness, college, disappointment, ebola, ehlers danlos syndrome, expectations, fear, fertility, future, humor, immune thrombocytopenia, itp, life, life after college, musings, pity party, platelets, relationships, spoonie, student loans, twentysomething, woe is me
