Lupus

https://www.buzzfeednews.com/article/tanyachen/kaiser-permanente-lupus-chloroquine

This angers me so much. Millions of pills were donated by Teva Pharmaceuticals as part of a potential way to eliminate coronavirus, but I will refuse to take it, if medically necessary, because I will NOT have others stripped of their life-saving medication. It was already done to me, and I can’t stand by and accept this. I will be reaching out to Teva to see if they can help people directly.

We thank soldiers for their service. We do NOT sacrifice patients who are already ill. If you’re so inclined, please contact your health insurance companies and pharmacies and make sure they are not party to this, as well.

It’s amazing how quickly life shifts. You think you know your place in this world, and the direction in which you are going. Then, often suddenly and unexpectedly, a letter, phone call, e-mail, or some form of communique shatters the floor beneath your feet. You’re left standing and asking yourself “Why?”, or in my case “Again?” There’s only so much I can handle in a day, but I’ve been dealing with horrible shit for the past eighteen years. When the hell does a person catch a break?! In this respect, I am trying to remain intensely positive because negativity doesn’t help situations one cannot control. The fact that I knew this would happen a few years ago is what upsets me the most. Sometimes, I hate the gift of premonition, and other times I am grateful for it.

On September 12th, I hurt my back. The pain has progressively worsened. I am terrified to seek emergency treatment due to the “war on opiates” and how badly pain patients are being treated everywhere in the United States. Massachusetts is no different. Every single day I have to hear about people overdosing in various parts of the state. Not on prescription pain medication, but on heroin. How is that MY fault, as a pain patient?! A representative for someone running for State Representative for this district was going door-to-door last Saturday, and specifically asked to speak with me. Obviously they’re looking for the millennial vote. 😉

Her first question was “How can Jen insure your vote on November 8th?” Boy, did she come to the right house. We spoke for about thirty minutes regarding Jen Migliore‘s policy for the opiate issue in this state. I said “Until she works to make sure pain patients get treated like patients, instead of drug addicts, she can’t count on my vote. Until she addresses it and does something to put addicts in a separate category from actual patients, she can’t depend on my vote.” We talked about other issues too, but I made sure this one was front and center. She assured me that if Jen doesn’t call me personally, someone on her campaign staff will. I’d actually be surprised to see her at the front door again because she’s already personally been here once, and that was to get her petition to run for office signed. She was a little too much the “made-up politician” for me when I met her, but it was brief and I will try not to judge a book by its cover, because all too often I am judged for “not looking sick”. She’s 25 years old and running for State Representative, and that takes guts. Is it terrible to say I want to re-do her makeup and make her look more her age?!

A few days ago a woman stared at me on the street and said “Oh my G-d! What a beautiful girl you are!” I was the only person in a full block radius she could have been talking to, but it startled me. If she hadn’t been old enough to be my Grandmother, I might have believed her. But then I got home (barely) and looked in the mirror. Not only don’t I “look sick”, but I actually looked amazing, for a change. I almost, ALMOST, indulged in a selfie. The first time I took one was about two weeks ago. I sent it to my brother who said “Holy shit! You look so different.” I said “Different bad or different good?” and he said “Good. You look SO GOOD.” My brother never compliments me, so I know it was a genuine reaction. I then sent the same photo to my best friend in Germany and she said I look absolutely beautiful. I suspect cataracts. 😉 For me, it’s a huge issue for others that I “don’t look sick”. My body, however, begs to fucking differ. 😦

But I digress… I have been off of prescription pain medication since 2012. I was the kind of patient who could make fifty Percocet last for two months, or longer, but the majority of my pain medication that I’d refilled each month (because my insurance paid 100% of the cost) was stolen by a family member in late 2012, someone who went through my private things and took thousands of Ultram and about hundred Percocet I had legally obtained for “bad days”, NOT for someone to get high off of. I was enraged when I discovered all of my medicine gone. I legitimately had the ration out what little was leftover for “bad days”. I wanted the person who did it to die; because they couldn’t respect my private space, my private things, or the fact that I am a pain patient that needed that medication to get through every bad day I experience. All of that “back-up medication” was in case I got cut-off from a physician, insurance, proper treatment, etc. Instead, it went to someone who was drug-seeking, and who, to this day, is still apologizing for it because I will never let them forget how evil what they did was.

Four years later and I have exactly two doses of Vicodin left for “bad days”. One pill that I cut in half in order to have two doses. I am in such agony as I sit here typing this that I desperately want one of those doses, but in the back of my mind I know I have roughly nine Aleve in my system. I also know that the pain is so intense, the Vicodin won’t work. 😦 If I had taken it when the pain was still bearable, it would have worked, but it also would have worn off by now. I shouldn’t have to be afraid to seek treatment, but I am. If pain management clinics aren’t doing their job (and there is a long wait to get in, providing you get referred to one.), and rheumatologists are now refusing Fibromyalgia patients and telling them to see neurologists, then where the hell do I go?! Do I pray for a solid PCP and hope they’ll give me Ultram and Flexeril to get through all the “bad days”, or do I hope for more?

My feeling is this: The last three states I’ve lived in royally fucked up my medical history. Each state has, over time, shredded my files instead of turning them over to me, which I feel is every patient’s right, even if we have to pay for the photo copies. My concussion history, which began at a very young age, is non-existent on paper! It makes me look like a liar, and I’d never lie about concussion or post-concussion syndrome, which I still have. There are maybe three doctors who still have files on me, but no one else does, and that means I have to start at square one.

This means going to a PCP here and not saying I have Fibromyalgia. I’ll declare my other health issues, like the migraines, but I am not using the dreaded “F word” with a new doctor until he/she mentions it first. It means letting them run every single test in the book and being officially re-diagnosed. It also means immense stress because I KNOW I’m suffering. I KNOW I’m in pain. I KNOW my blood work does not show any other auto-immune disease, but in the back of my mind I have the “What ifs”. We’ve all had these moments. “What if it’s actually Lyme disease and I’ve gotten false negatives my entire life?!” or “What if it IS Lupus or MS?” Of course, none of those other diagnoses make an ounce of sense; not one. I don’t want to waste my time going to physical therapy (I already know it doesn’t work) or anything nonsensical. This is less about medication and more about the correct treatment methods.

The last neurologist I saw told me Botox for migraines was likely my only remaining option for now, so I need a new neurologist to agree with that and get it approved. I’m okay with needles if it works for me. I’m okay with MRI’s, X-Rays, blood work, etc., so long as I see results in my treatment methods. New MRI’s and X-Rays will show the damage to my spine, which explains much, but who knows what else it will show? I don’t care, so long as it means I am getting the correct treatment.

I have zero faith in the medical community. I’ve been treated here once in an emergency and the Urgent Care staff was amazing, but I had injured my eye and the only thing I was given, despite being in pain for months, was antibiotic gel to put into the eye multiple times per day. I’m still using it, because I don’t believe my eye is fully healed. There are days when it looks SO bad that I worry, and while my vision is not any more impaired than usual, it’s disconcerting. That’s okay though; I need a vision exam ASAP any way. There’s nothing like new glasses and new contact lenses. 🙂 Perhaps I’m the only one who gets excited about such things.

I’m sick and tired of the stress pain patients are put through, and the scrutiny of whether or not we “look sick”. No, I don’t “look sick”. I have seen the faces of other Fibro patients and was absolutely mortified. It made me question so much about myself, and not in a good way.

I have blank cop face most of the time (it helps me avoid wrinkles. Well, that, water, genetics, and SPF 50.), and yes, I wear makeup. I don’t do it for other people; I do it for me. It’s an artistic skill-set that I find enjoyable. It doesn’t mean I’m in less pain than one hundred other people, and I’m not going about to compare and contrast because it is NOT a competition, but when I look in the mirror, I realize why I get treated like my pain isn’t real. My eyes are not dead; they sparkle. My skin is healthy and looks good, with or without makeup, and even my bad hair days are still relatively decent. I don’t look exhausted, even when I am. I consider most of this genetics and the fact that I take really good care of my skin, but it makes me feel even worse to know I don’t “look sick”. Again, it’s not a competition, but I am judged for this harshly.

My body is filled to the brim with pain, but I don’t “look sick”. Would I say that to a cancer patient wearing lipstick? NO. However, unless a person tells you what they suffer from, you just plain don’t know what their battle is in life.

It would be nice to live in a world where we judge less on appearances and took people at their word. Of course, Donald Trump is also running to be President of the United States. Perhaps I’ve landed on the wrong fucking planet! 😦