I’d rather have cancer

I was looking though some fibromyalgia blogs and I found this little snip bit. I thought I would share. This would probably surprise most people to hear, but I feel as though people suffering from severe fibromyalgia feel the same way.

“The friend of a friend said to me recently that she heard I have some health issues. I replied yes, that among a lot of other things I have Fibromyalgia. She was silent for a minute and then she said “At least it’s just Fibromyalgia. It isn’t like it’s something that could kill you like cancer or something.” Without missing a beat I looked her directly in the eye and replied with “I’d rather have cancer.”

Eyes wide and mouth gaping open she was stunned into silence for a few minutes. When she regained her composure she asked if I was serious. I told her that I was completely serious. I explained to her that Fibromyalgia is a strange illness, in that it effects people in different ways. It has varying degrees of implications on different people. Some people have it enough to notice it and have it be annoying, while others are completely bed-ridden from it. I’ve even known of a lady who in a flare couldn’t stand up and walk, and had to crawl on her hands and knees to the restroom.

Don’t get me wrong, cancer is a horrible monster that causes pain, agony, and destroys lives and families. I wouldn’t wish it on anyone. So does Fibromyalgia though. With cancer, the pain and agony is going to end. No if and’s or but’s about it. The pain and sickness will come to an end. Either a person is cured or else they die. With Fibro, there isn’t any end in sight. It’s an entire life stuck in an earthly hell of pain, fatigue, co-morbidities, and sickness.

In my thought process, I’d rather have the chance of a cure and at least knowing if it doesn’t work that my pain will end anyway. Yes, I’m thankful to be alive but thinking about having to live for 40 or 50 more years trapped in this hell is daunting and to be completly honest, I’d rather not. No, I’m not suicidal in the least, I just would rather not have to live this way knowing it could be decades upon decades.”

Mind drunk

Hello once again…

I know I have said in previous posts that I aspire to be a celebrator. To celebrate life itself- all the big moments along with the small ones. In my mind, a good coffee is worth a mini celebration. Life is short, right? But we all have a vision of who we would like to be and what we are in reality. Thats why you see inconclusive results in self evaluation case studies- people don’t give an accurate description of who they are, they focus on what they want to be. Well in my case, I want to be a celebrator. However this isn’t always true. I wish it was, but it isn’t. I have bad days like everyone on this planet does. Today was one of those days.

This week I was home for spring break. I was really looking forward to relaxing and doing absolutely nothing to counter at my busy life at school… but like I said before, theres expectations and then theres reality. In reality, I spend my breaks at home hopping from one activity to another, obligated to see everyone while I’m in town. I’m lucky to get one night where I am actually completely relaxed. One of these activities was visiting a neurologist. If you have read my previous posts (if anyone even reads these darn things… i don’t really expect anyone to) you know that last time I was home i visited a rheumatologist. He told me he doesn’t think I have lupus. Of course he didn’t know what else it could be so he decided to refer me to yet another doctor to see if they could figure anything out. I had to wait 3 more months in Pullman until my next appointment… as you can imagine, there were several days spent in agonizing pain. There was one day that I couldn’t even wait 5 minutes to meet up with Sam for lunch- I couldn’t stand let alone eat for an hour in a public place. When my pain comes on strong, so does my anxiety- I walked all the way back to my dorm, crying silent tears the entire way. As you can imagine, I spent these three months HOPING that this doctor would know something. Have you ever hoped for something to be wrong with you before? Not many people know that feeling… let me tell you, its something else. Your whole life you’re taught to hope for the best, but what happens with the best solution is a terrible one? In my case, the best solution at this point is to hope they can find something wrong with me, because then I can hope to be cured and not have to live with this my whole life. All the doctors I’ve seen up to this point think that its fibromyalgia. Let me repeat and put emphases on the word THINK. You can’t really know if someone has it or not- you can’t diagnose it. The only way you can diagnose it is to rule out all the other possibilities. So my neurologist was the next step- her job is to rule out anything neurological. From the moment I made the appointment, to the moment I stepped into the office and all the moments in between, I was hoping she would say she knows exactly whats wrong with me. Even if it was something bad, anything, even a NAME, would bring so much ease for me.

The appointment went like this:

Sam and I walk into the room, the doctor walks in, takes a glance at my history and says “yeah its probably fibromyalgia.” Then she plugs a couple of digits into the computer while asking me whats wrong. Not once during this appointment does she make eye contact, mind you. So I tell her all about my legs and about being sick all the time and yadda yadda yadda. She’s just clicking away at her computer. Then she has my sit on the bed in the room and proceeds to do her “procedure” if thats what you want to call it. She taps my knees, holds metal to my finger and asks if its cold, pricks my finger and asks if it hurts, has me walk in a straight line as if I’m walking on a tight rope, tests my leg and arm strength and then the meeting is over. She tells me I need to revisit my regular doctor because she couldn’t find anything neurologically wrong with me. And just like that, I’m out the door. It was a 15 minute appointment that I must have spent $250 on. All the things she did to me I could have done myself at home! I waiting three months to have someone prick my finger?! I was furious. I left the office with tears of frustration in my eyes. That appointment brought no new knowledge… and she wasn’t even nice to me. It was a waste of my time and hope.

Ya know, when this happens to you over and over and over again… you would think that you would start to get used to it, but you don’t. It hurts just the same every single time walking out of that office. My parents celebrate every time they hear another doctor say that they can’t find anything wrong with me, but I mourn the loss of what could have been- peace of mind and ease in my own body. People might think that this feeling leaves. That hope returns. It doesn’t…. it lingers. If you have a chronic disorder or illness you know exactly what I mean when I say we are surrounded with endless positivity and support that doesn’t make us feel any better about whats happening. This is our reality. We live with this pain day in and day out. Its easy for people to say “you will get better” and “stay positive” when its not their own self having to go through it. I yearn for someone to look at me in the eyes and say “you know what, this sucks ass and I hate that you’re having to go through this” and just let me cry. Let me cry and scream and say whatever I want about it without any advice or positivity for the future. Just accept the situation. I don’t blame people for being like this, its our human nature. Its actually how I would behave in the situation. But I wish I had that all the same. I don’t have an outlet for all this pent up hurt I have inside after appointments gone wrong or particularly painful days. I have no where to go. No one to talk to. Don’t you hate the feeling that you don’t have anywhere to go to feel at ease in your own body? You feel trapped. Today, I felt trapped. I couldn’t escape the pain. Emotional or physical. I didn’t want to be with anyone. I didn’t want to do anything. I just want to be in a numb world for just a couple minutes to catch my breath. I completely lost it. I’m at my boyfriends house by myself and I completely lose it. I’m laying in his bed, bawling my eyes out for no reason but life itself, and I completely and utterly lose it. I’m screaming and crying and throwing punches at the air… something I do when I have a serious mental breakdown is i dig my fingernails into my skin. I don’t know why, I think it may go back to my self harm days. Anyways, I get this feeling in the midst of all this like I need to run. To just leave the situation I’m in. Escape all my responsibilities and obligations for only a couple minutes. A couple minutes seemed like the world. But where would I go? Not home. I couldn’t stay at Sams. I couldn’t go anywhere were there was people. I finally decided to drive to a walgreens parking lot that I back spaces behind the buildings where I could park and not be seen. I lay my chair back, lock the doors, but on sunglasses and just lay there and cry. Bawling for a good hour. Once I stop, I continue to just lay there. Silence. No music. No people talking. Not even the sound of my breathing is loud enough to disturb me. Just staring at the ceiling in complete bliss. Not a thought passed through my mind. Tiredness crept over me like a warm hug. Have you ever been so tired from crying its like your mind feels drunk? Like you just don’t give a shit anymore cause you had a good cry and you’ll take whatevers coming to you next? Its exquisite.

To be honest, I have no idea why I felt like I needed to document this day. The day that I had a complete mental breakdown for the hundredth time this year. I guess I’m just tired of pretending these moments don’t matter, because these moments are my life. I want to celebrate these moments… even the shitty ones… cause it means I’m still alive and living life. I say that, but its so much easier said than done. Celebrating pain and deep hurt and frustration isn’t the easiest thing to do in the world. In fact, if anything, you wanna look up to the sky and ask God why your life has been cursed with chronic pain. But the more I talk about it, the easier it gets. I’m lucky to be where I am, even if where I am sucks pretty bad.