It’s hard to remain positive all the time. It’s hard to not feel like this is some kind of punishment or karma for something I have done. Despite having remained surprisingly upbeat and unfazed by my diagnosis 4 months ago, it’s becoming hard. When there is no end goal, no cure, nothing that can be done other that trying to slow down the progression of this monster inside me. That is what it feels like, like there is this horrible disgusting evil thing inside me trying to make my life as hellish as possible. Even though I win against it most days, there are times like now where I am too tired to be positive and upbeat and I allow myself to be down and the monster wins.
I am so happy that I pushed the doctors to find out what was wrong with me because I knew something wasn't right, if I had just ignored what was going on I would be blissfully unaware right now. No matter how happy I am that I have been diagnosed I sometimes wish that I had never gone to the doctors and just left it because no matter how hard everything was before and how much pain I was in, at least I wouldn't be suffering from the side effects and lifestyle changes of these stupid drugs, the benefits of which haven’t even kicked in yet. My hands and feet are still swollen and in pain. These drugs as supposed to stop the pain and i am not allowed to take pain killers while on the drugs. Every week I have to take 6 pills in a oner and then folic acid the next day to help reduce the side effects, a few of which are; Bloody vomit, blurred vision, confusion, seizures, hair loss, loss of appetite, tiredness and weakness and joint pain (ironic). I have had my blood taken about 15 times in the last 10 weeks I have had an MRI, x-rays of my hands feet and chest, 3 hospital appointments and have another one in a month where I probably have to have another lot of MRI’s, X-rays and blood tests. I am not allowed to learn how to drive, which is one thing I really wanted to do this year and now I have no idea how many years I will have to wait. I can’t get pregnant while on the drug because it would terminate the baby (this is obviously not a concern of mine now but in the future trying to get pregnant will be a significant issue). If I did want to get pregnant I would have to come off the drug for at least 6 months before even bothering to try and even then I would have to stay off them for the duration of being pregnant and a while after during which time the arthritis would begin to progress again. I can’t meet any guys because when I am out they are all wasted which is awkward for me or they try and be nice and buy me a drink and if I have already had 2 beers that night I have to tell them no which makes me seem like a bitch. I then have to either tell them why I can’t drink which would involve telling a complete stranger a really personal, upsetting and embarrassing fact about myself or I lie and come up with another stupid reason why I can’t drink which would be either; I'm pregnant or I am a recovering alcoholic. This would most likely send them running for the hills. I already have insomnia and have done for a couple of years but now I really really just want to be able to sleep because these drugs are exhausting me and the only option I have left is sleeping pills and the last thing I want to be doing is taking more pills.
I know all my other posts have been very humorous and light hearted about what is going on, but at the end of the day I have spent the past 4 months terrified and the drugs that are supposed to help my symptoms actually make me feel worse in every possible way. I have asked the doctors multiple times how long I have to do this for and I haven’t had a straight answer out of anyone which I assume means no one wants to tell a 19 year old that this is how her life will be for the foreseeable future. I have googled ‘cure for arthritis’ and ‘new drugs for arthritis’ every other day for 4 months hoping that something will pop up one day and yes there is work being done into a cure and that is amazing but it will be 20 or 30 years down the line before I even get a shot at being given it and it is too damn hard to even imagine having to be positive for that long. In the meantime all I can think about is that I won’t be able to get drunk on my 21st birthday or New Year’s Eve, I can’t do most of the things everyone else can and it is a massive bag of horse shit.
To end this rant I see no other option than to go live on my own in the countryside with my 5 dogs. But in all seriousness, this isn't some suicidal blog post I just thought it was important to show that even though I appear positive all the time, it’s impossible to be constantly optimistic and sometimes I need to have a rant and complain and throw a shit fit about how this isn't fair. I might be sad about it today but I know that tomorrow I will be fine. Because regardless of how much this sucks ass, things could always be worse. I am alive, I am not blind or deaf, I can walk, I have amazing family and friends which some people can’t say and those are the people I truly feel sorry for. No matter how bad it all gets, it would be 19438483 times worse if I didn't have my friends and family.
To once again end on a happy or humorous note, I found out that apparently the Loch Ness Monster did/does have Arthritis too. Odd.