The most awesome thing about having any invisible illness, yet several ones is no one knows! Yes, I am being sarcastic. Today I woke up feeling terrible. In tears in fact. My head pounded, every joint in my body ached. My muscles hurt from a few falls that I have had recently, doctors say its from muscles weakness….yet outside; I still look like the girl on the left, but boy did I feel like that creature on the right but after being beaten by a baseball bat. If someone had pointed a gun to my head this morning I would have begged them to pull the trigger, just to make the pain stop!
So, to just go on with the today before I get into my rant. I had an infusion, which is done by IV injection and takes about an hour. Not chemo, its a new drug called Benlysta that was made specifically for people with Lupus. I had my 5 year old settled down in the chair next to me playing games on his tablet and I see my doctor walk by. I didn’t have an appointment to see anyone today, just my treatment. He waved and I waved him to come here. He being a good person came in running, and the tears started falling again. I am not a crier, never really have been. I will bottle it up as long as I can. Had three kids with no pain killers and didn’t shed a tear. OK, back to my story….you get the point. He grabs my hand while I tell him how much I am hurting and I keep falling down for no reason. He said he could tell I had lost a lot of weight, 13 pounds since the last time I saw him. He then told the nurse I needed to see the Nurse Practitioner TODAY!
I finished my infusion, got a shot for pain, was put on steroids for a month and recommended to go the physical therapy for my muscle strength. I do squats almost every night…not sure how they are going to make me stronger. Where am I going with this? Please, please don’t judge people from what they look like on the outside. Yes I am thankful I don’t look how I feel, but when I tell people I have lupus I don’t want to hear “you don’t look sick”. In fact that is the worse thing you can say to someone with a chronic illness. When the nurse practitioner saw me at my “psychiatry” appointment (because you don’t actually see a doctor anymore he just signs the script), she said you don’t look like you have Borderline Personality Disorder, so we will write Bipolar 1, it looks better on paper. Yes, we will discuss this in another post.
So I have guys tell me all the the time how beautiful I am. Took me years to realize, alright, I must be decent looking or there are sure a lot of blind me; but I get it, almost 6 foot tall, thin, long dark hair and blue eyes. Yet, looks not only fade but are not important and have never gotten me anything other than a free drink. People are beautiful inside, but sometimes you can be pretty inside and outside while you fight some terrible monsters. I have some beautiful friends who are suffering inside. Lupus, Sjrogrens, RA, Raynauds, PTSD, BPD, Anxiety Disorders, Suicidal Ideation…..do you see them when you see the girl on the left? I don’t in the photo, but when I look in the mirror I do. I see deep down and see all these monsters that for some reason God thinks I can handle. I see so much that at times I want to put my face right through the mirror; there is nothing pretty about that.
So you guys that see the girl on the left, can you handle the monster on the right? Can you handle the days she can’t get out of the bed because the pain is so intense. Can you take her to the hospital when she can’t drive? Hold her hand when she goes through testing. See her going on chemo and losing her hair, not so pretty anymore huh. Give her shots of chemo in her muscle because she is too scared? ….RISK losing her, Lupus can kill and does every day.
Still only see the pretty girl on the right, don’t be surprised if I shoot you the bird if you cat call or whistle at me. Seriously, don’t judge people by their looks….they mean nothing.
Have a happy Friday!