One great thing that medicine doesn't take it's time for is chest pain. I had an appointment within a week. I went to the hospital today for cardiac testing. Every dopplar/ekg/ultrasound I have ever had has been very traumatic, yet I wasn't as nervous until right before. However stressing out before cardiac system tests would not be so good.
The tech was very kind and very gentle with her pressure, although points did hurt quite a bit of course. Luckily there was nothing that showed up as emergency, and I was sent home.
I'm now feeling extreme pain, intense pressure on my chest and into my spine, and same pushing on my arms, shoulders - my breathing is a bit laboured. Still, I have been through tests that have been much worse. During the test some was audio, I said, see the elephants ARE in a rave in there!
I am 99.9% sure this is costochondritis, and not my heart itself - yet I know this will be difficult to say that it is, but much easier to say what it isn't. This is possibly the most frustrating thing about lupus, and why awareness and education all around is so important.
On some good news, there is help coming - help that will be available to keep going as I am, with help to and from appointments/tests, and help with social services to help advocate my case for disability.
I am not used to 'powers-that-be' in my corner and I am still in shock and a bit overwhelmed over the entire reality of the situation, but I feel much better and partly my resolve in human decency has returned a little bit.
People do care. It takes a ton of fighting, but it is worth it to find those that will fight along with you.
Now I have to stick things up my nose to get rid of the hospital smell.
The elephants have been partying non-stop, playing shuffleboard on my chest with anvils, and as any good hardcore ravers, they have introduced electrical whips attacking my chest, feet, legs, and everywhere.
Monday was a scary day, and I've been mostly trying to stay calm and not allow panic attacks. I have felt legit in saying "What is happening now?". No, this isn't just a knee pain. This is severe all over pain in addition to the severe everyday pain.
I am not used to it, but if this is what will become my new normal, I suppose I need to. I am not sure what to do or how to deal with the latest onslaught of attacks.
Luckily I'm not dealing with it alone. I am still finding things to laugh about, although it hurts. I am a person that NEEDS to laugh and to feel somewhat normal sometimes. If I let myself think about this too much I will go into a dark place that I might not come out of.
Part of feeling normal and laughing and helps so much, is meeting people that are going through a similar hell. Not that my friends and family aren't doing everything they can for me, and for that I am ultimately happy and thankful for, but to be in the same room (that isn't a hospital) with people that know what it is like, is remarkable.
I would never wish this hell on anyone, not even a worst enemy (and I have a couple).
The thing about chronic illness is that it is chronic. I understand how hard that is to really grasp. It never will go away, I will never have a pain-free day, I will get worse and not better. I am not being alarmist, I am realistic. I need to be. Would I love to live with rose-coloured glasses, yes.
I just take one day at a time, one moment different from the next and try to accept what is happening. With people by my side, it makes it that much easier.
All I have is my love to give.
My first week and a half in SoCal has been amazing, I haven't used the chair since I got here. This doesn't mean the pain is any better, but that I am a bit stronger. Some days I can do things, some days I can't do what I did before. This is the nature of this beast.
Except yesterday. Had a very rough day, epic pain and the worst costochondritis ( http://www.mayoclinic.com/health/costochondritis/DS00626 ) attack I have ever experienced. It is extreme sharp pain, I describe it as elephants sitting on my chest, and stabbing in between my ribs and crushing. It's very alarming, as anyone who goes through this will attest I'm sure.
Last night was crushing, ribs felt popping out through my skin, and the elephants were running many marathons, while the army of charlie horses were racing in my legs, my veins were pinching and releasing, my spine as usual wants to pop out.
It is also tough to deal with this emotionally. Usually I try to be very very strong, but it was overwhelming - and I had tears. This then turns into self-hate, and very dark thoughts.
It's all frightening.
I am so very lucky to have friends that are taking care of me, as caregivers, best of friends and who offer to help ride through it together. They help me to laugh, love and live, and through this darkness, I am the luckiest girl in the world to have such a strong circle of support, and I can't say thank you enough.
I know I wouldn't be here now without you that have kept me going.
Thank you for reading, sharing, supporting in this battle that is the hardest thing I have ever had to endure, every minute of every day.
Love and many many thank yous.
