These past few months have definitely been a rollercoaster.
All I want is for all of this to be over so I can go back to living life like a normal human being. Is that too much to ask for?
Yesterday I had to cancel my Europe trip, and even though I knew this was something I was most likely going to have to do since nothing seems to be conquering this ITP, it still put me in a funk.
Life right now, just feels really unfair.
I know that I have a lot to be grateful for still, don't get me wrong. But some days it's just hard to see the light at the end of the tunnel. Especially when nothing still seems to be working.
Although I am out of hospital, it doesn't mean I'm getting any better. It just means I can lie in my own bed all day instead and not have to listen to the constant beeping sounds all day long.
Not that I'm strictly meant to be on bed rest, but when you get random nose bleeds it makes you not want to leave the house.
While I was in hospital I had a bone marrow biopsy just to rule out that I didn't have anything besides ITP. (Like Leukaemia) Let me just tell you now, it's probably the worst thing I've ever had to do in my life so far. If you ever have to get one, ask for morphine because the local antiseptic needle is a killer. Although it wasn't a very long procedure, it felt like hours. It was the most uncomfortable and weirdest feeling, I can't even describe it, but I was so glad when it was over.
Luckily, the results came back all clear, and that what I have is 100% ITP.
With these results, it meant trying a new treatment.
Rituximab. I did my fair share of research on it (Thanks Doctor Google) which made me very nervous about trying it. A lot of people were talking about having allergic reactions to it, or bad reactions afterwards or that it didn't work at all. But a lot of people were also saying it put them in remission for years. So I was optimistic and hopeful. I am willing to try anything before taking out my spleen, after all.
I have since had two Rituximab infusions, with two to go. Thankfully, I had no reaction to it, although so far, my platelet levels haven't responded to it.
The thing about Rituximab though, is that it can take weeks, if not months to kick in. So HOPEFULLY, there's still a chance that it's going to start doing it's job.
I'm getting blood tests done twice weekly to keep an eye on my platelet levels, since they are still hovering around the 20,000 mark, which is still in the danger zone.
They say that everything happens for a reason, but it's hard to be optimistic when you have an illness that you can't fight, do anything about or see. Especially when all the treatment for what I have just isn't working.
Do you know how annoying it is when someone says "But you look fine, why aren't you at work?"
I know that I feel fine, and for that I am grateful for, but it's also insanely frustrating. I may feel fine, but i'm still not allowed to go to work, I'm not allowed to travel and I'm constantly worried about getting a blood nose or a random bruise in a bad spot.
It's not much of a life constantly being stressed out and not being able to do anything. What's even more annoying is that stress is apparently a big trigger for ITP. So stressing about having ITP is doing wonders for my ITP.
It feels like I'm living my life but not being able to live. Like when you have those dreams where you want to do something but your feet won't move and then what you wanted vanishes. And you missed out.
That's what life feels like right now. Like I'm missing out.
Anyone have any good tips for dealing with stress? I am all ears.
Europe, I'll be back for you eventually.
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