Appointments are never fun when you have a chronic illness… let alone several. I can count on one hand the number of positive experiences I’ve had with medical professionals in the last 5 years. So when we find a passable doctor it is definitely one less thing to stress about.
Since moving here 2 years ago I have been getting free care at a clinic. Back in CA I was covered by CMSP, which paid for all emergency room visits, all prescriptions were free, and all the specialists (except for the Fibromyalgia Center which was out of pocket) -I cultivated after 2 years of being shuttled to all kinds of different doctors and being treated like I was imagining my illnesses-were covered. I was set. Here, I am grateful to be able to go to the clinic for free, but specialists are out of pocket and so are prescriptions. There is no doctor, but I see a nurse on a regular basis and over the last year we have come to a familiarity and she is very kind, albeit obviously very annoyed and frustrated at her job.
Today I went in and a different medical assistant took my vitals. I’d never met him before and as he was inputting my reason for the visit, he was asking what my conditions are. I started rattling off the list… and he told me to pick the 2 that were most of a problem. Um… all… but I did and we were chatting away, when he asked what the origin of my Fibro is. “What do you mean?” I asked. He then proceeded to tell ME about MY illness and how it is brought on by a car accident or trauma (you know, the stuff it says in textbooks or on the internet. The blanket “reasons” we have this disease.), so I told him about how I went on a missions trip to the Philippines and I got sick and never fully recovered, mentioned the kidney infection I got later that same year and how after that my body just started falling apart… skin, bleeding, bursitis, osteoarthritis, psorasis, dyshodritic eczema, frequent infections, viral infections, etc. Immediately he told me that it was all a spiritual attack.
Now, I am a believer, and I am not opposed to the fact that some conditions might be spiritual, however, reflecting on it now, I feel it takes a very real, debilitating illness and makes it seem like we are just not spiritual enough or that we have some sin that is allowing for this stronghold. It’s the same mind frame that was prevalent in my old home church. If we aren’t healed then we must be having an attack, or we are in sin, or we just don’t have enough faith. It’s our fault we are sick.
It’s bullshit.
He tells me he is a youth pastor and that starting today we are going to pray in agreement to get rid of these illnesses. He wrote down his website address and TOLD me to friend him on Facebook (I didn’t bother to mention I no longer have one), and here’s the part that I felt God speaking fresh into my spirit: he told me I need to write a book.
Whoa. That’s been my dream ever since I was a little girl. There’s no way for him to have known that, and many people have spoken that over me in the last few years. I told him that and he said “someone out there needs to read your story.” Talk about a timely word! I’ve been feeling discouraged lately and that totally refueled my spirit.
Then he mentions a nutrition class, and tells me since I don’t work that I could go tomorrow. Talk about assumptions! He was a nice guy, but again, upon reflection, I feel the judgment. Not against me personally. He was very nice, and we had a good chat, but against those of us with illness. The stigma that if we are unable to work that we have all the time in the world, that we aren’t proactive, that he knows more about my illness than I do because he read about it somewhere. As if we just sit around all day eating bon bons, instead of using every ounce of energy and willpower to get through each agonizing minute. I get that it’s hard for people to look at our exterior and not realize that being sick is a FULL TIME JOB. There is no break. EVER. It’s not some little flu bug that’s going to go away in a day or two. We’ve still got to wash our laundry, vacuum, fix the bed, shower, and do everything else a healthy person does… we just have to do it sick, day in and day out. And not being able to work is a killer for the spirit. I would LOVE to get a job! I would LOVE to have an income! I would LOVE to not be confined to the house everyday, with little field trips out into the real world. If it were so easy to just go to a nutrition class when I so desire, I would do a whole heck of a lot more things I crave and ache for.
Anyway, on to my appointment: my nurse and I are talking and catching up on my health. I tell her about my trip and my hearing in August, about family visiting, about going to VA twice and how accomplished I felt! How August was a good month for me, despite the pain and fatigue. Then In September I got normal people sick (flu/head cold) and had family issues and my body just slid into recovery mode, and that the heavy blanket of fatigue only started lifting a bit last week. We discussed other things too, among them the whole pain killers thing. She is wanting to ween me off, because they are cracking down on her and the other staff for prescribing them. Since I only get 30 pills per month, she wants me to get to a point where they are only prescribed episodically (like a trip or a bad pain month) versus regularly. She said she only prescribes to two patients- me and someone else. I get what she is saying, and I don’t take them everyday so it’s not the end of the world. I usually only take them on supremely bad days or during travel, or times when I know I will have a lot of activity. It’s annoying that people don’t realize that we aren’t junkies, but that we have pain that is literally 24/7. Maybe if I just had one condition, but I have several that are incredibly painful- hip bursitis, osteoarthritis, and tendinitis being just a few of them, on top of Fibro.
She was pleased at my weight loss. I’ve lost about 30lbs. since March (I credit the pau’ d arco tea I drink nightly to get rid of the candida), and she said I seem better. Writing that makes me laugh. Literally. That’s the thing about people who don’t have Fibro… they can’t seem to grasp that just because we smile and have a personality doesn’t mean we aren’t sick. It just means we are strong, that we fight through the pain and judgments, that we do what we need to do when most people would curl up in a ball and cry about how terrible it feels. I admit, I do that sometimes… though far less than when this all started and I had absolutely no idea what was going on. I smile more frequently now, I don’t feel super depressed right now, but I am all too aware that could flip like a light switch at any moment. My attitude is contingent on how I feel. The more my pain is amped, the more likely I am to be moody or lose my temper. The more fatigue presses, the more likely I am to cry and feel like I will never get better. Good days are just that: good days. It doesn’t mean I’m cured or fixed- though that would be spiffy.
All in all it was a satisfactory visit. They got new computers at the clinic and today she was having to input all of my ailments again… as she hit the 8th or 9th one, I felt that old feeling (which I haven’t felt in awhile) of shame creep over me. As if it is my fault for being sick. Like I asked for this. People get so impatient. I feel like saying as they sigh, “if you feel that way just typing it into the computer how do you think it feels to live it?” I dread knowing I have to apply for this Obamacare and will have to find a new doctor at some point. Fellow sickies will understand. When we are all settled with a doctor/nurse, and our medications and then we have to start all over we run the risk of being told yet again that we are too young, that we can’t possibly have all of these problems, that we just have to change our diet or exercise or twirl in a magical circle 12x and we will be cured. It’s such a soul crushing experience to hear that. And going to a new doctor is always a gamble.
Both conversations today were nice, but they held the undercurrent of prejudice against Fibromyalgia. The push to be better, feel better, be cured. Whether it be cured by modern medicine & determination, or prayer. It frustrates me. Saying it’s all spiritual is another way of saying it is all in our heads.
It’s invalidating.
I just wish there was more understanding in the medical community, or that there would be a cure, or that it would just cease to exist. I swear. Fibromyalgia is so misrepresented and misunderstood. Damn you, every Lyrica commericial.
