Sunday, August 2, 2015
I read this article ans felt so connected. This person definitely has a similar experience and philosophy to mine. Read this. Learn things.
It's so reassuring to not feel alone, even just from reading a stranger's article online. I know I'm not the only one. There is amazing comfort in that.
I want the people in my life to read this list and really pay attention. It speaks some hard truths, but a lot of us spoonies need people to become informed. So my wish is that you'll read the list AND my personal comments which may apply to some spoonies, but definitely applies to my life. The article is linked above. Below are a few of my personal thoughts with the corresponding point from the original poster's list.
Whatever pain I am in, people underestimate...? That does sound accurate though WHY. I'm going to need you to overestimate how much pain I'm in. It's unbearable. Consciously remind yourself. No matter how bad I tell you it is, I'm trying to be tough and push through and downplay it.
Become familiar with the spoon theory. Speak to me in that language, ya know asking if I had to borrow a spoon from tomorrow to get this done.
I go to Frederick, and Philly, and NYC for doctors that understand and care about me. This is normal.
PLEASE PROMISE to never again tell me I don't look sick. It's not a compliment. Also, if you feel compelled to tell me I look good, just mean that I look nice. Don't make it, "you look good...you must be feeling better!" That's not how it works. I have an invisible illness, invisible means can't be seen. I have a chronic and incurable illness, this means I will never get better.
6. We Don’t Ignore You
Pain and being sick and Blaze consume my thoughts. You can call me selfish if you want, but after my health and Blaze, there's little room for much besides my family. It's not personal.
14. We Don’t Want Your Medical Advice
It's thoughtful when people do research cuz they care. It's annoying when people assume some fad diet or exercise will be a cure all for any medical thing without knowing what's wrong with me.
Sometimes pain demands sleep and tears. And that's all that can be done. It sucks. But it can't always be helped or lessened.
12. We Don’t Have a Job for a Reason
I wish I had a job.
13. We Don’t Want Sympathy, We Want Acceptance
I wish I had acceptance.
Wednesday, January 28, 2015
I haven't blogged in a while. It was a mix of reasons. I had no big news updates on my health. It's all as it has been. I doubt daily updates about PT or not getting out of bed are of interest to anyone. So I've just shared some rants or pictures on FB and IG. I was going to put this rant on FB but it got long, too long for a status.
So here it is. I've been sick for over a month, because CFIDS and interaction with humans carrying germs. In the last week and a half I've been to see a doctor three times. Not much came out of this, except I have a sinus infection, I don't have strep throat, and CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME is the worst name for this disease. Few doctors know what to do with it. So instead of being treated as a patient who can't kick an infection because of a weak immune system, I'm treated as a head case or as though CFIDS isn't real. Instead of getting help I've been defending my condition and my medical history. I've been attempting to educate a doctor on the realities of my life, not to be condescending, but in hopes of receiving better care. Life with a deficient immune system is a never-ending series of doctors, and my experience has been of the extremes: the doctors who get it totally understand and are amazing, and the docs who don't really, really don't.
So primarily for my need to vent, here are pieces of my exchange with the doctor:
Me: five to seven day courses of antibiotics tend not to work for me, because I have CFIDS. I've literally ended up taking antibiotics for 9 months in a row because of my immune system.
Doctor writes a script for a 7-day treatment. Upon seeing me for a follow up 11 days later, during which time I've gotten worse, she says, "well, it should've worked. It's the best antibiotic."
(My body sucks. It doesn't respond to a 5-day treatment or a 7-day. This is why I try to avoid antibiotics, in hopes that an infection will run it's course. Because otherwise I'll have a month of antibiotics. I know it "should've" worked, but having CFIDS means a lot of medical "should" and "should nots" don't apply.)
Dr: I'm going to recommend that you follow up with another doctor, see about all of this stuff. The sinuses not clearing up, the sore throat, the tender lymph nodes, the pain, needing to use your inhaler... You should get some tests done
Me: well, I have Chronic Fatigue and Immune Dysfunction Syndrome. And with that chronic sinusitis and chronic bronchitis. This sucks but this isn't abnormal for me.
(Do I need to get you a pamphlet on CFIDS? I don't need tests. I've already had all the tests. My thyroid is fine, I have high levels of various viruses in my system, I don't have low levels of immunoglobulins, etc etc etc. I've met the criteria for a CFIDS diagnosis, and eliminating other possibile diagnoses three times in my life; one if those times was a year ago. Every time I have hoped for a different diagnosis but this is what CFIDS is and does. This is it.)
Dr: what day will that medicine run out?
Me: I'm not sure, it's in my pill case, so I don't see how many are in the bottle
Dr: are you taking this as prescribed?
Me: yes, twice a day
Dr: I don't think you're taking it as prescribed
Me: I don't take it from the pill bottle, because I have a weekly pill case. I fill it up with my appropriate doses for the whole week in advance. That's why I don't know how many I have left, they're already in the case
(Because the patient must be wrong. Otherwise maybe the doctor is wrong or the medicine doesn't work!)
Me: I also have this rash. I know what it is; it's an allergic reaction to surgical glue used to close an incision from an operation almost 2 years ago. It doesn't flare up often, but when it does my Hopkins doctors say I'm supposed to use a topical steroid cream.
Dr: you're already on oral prednisone. You can't mix that with a topical steroid. The 6 day pack should cover this. It'll clear it up.
Me: even though there's only 2 days left of prednisone and this rash started when I was already taking the prednisone orally?
(*bonus* we came back around full circle to the results one should get from medications and how my body doesn't work that way. Bam!)