Comments on "16 Things People With Chronic Pain Wanna Tell You"

I read this article ans felt so connected. This person definitely has a similar experience and philosophy to mine. Read this. Learn things. 

http://www.lifehack.org/285489/16-things-people-with-chronic-pain-wanna-tell-you

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. 

1. We Don’t Make a Mountain out a of Molehill 

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.

2. We Need to Balance Actions Carefully

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.

3. We Struggle to Find a Good Doctor

I go to Frederick, and Philly, and NYC for doctors that understand and care about me. This is normal.

5. We Try to Look Our Best

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.

7. We Know Our Illness Won’t Go Away <AND>

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. 

9. We Don’t Always Know How to Manage Our Pain

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.

CFIDS in NYC

Dear friends who read my blog,

As part of my health care and my fight for disability I have started seeing a new specialist. CFIDS specialists are rare finds. When I was younger I had a doctor at Johns Hopkins. He is one of the leading researchers in the country and keeps remarkably busy trying to balance his research schedule with his treatment of patients. Since I stopped seeing him for a long period of time, I would be a new patient if I went back and he is not currently accepting new patients. As a result, I had to go on quite an adventure to find a new doctor.

I saw her yesterday. This is the text I sent out to update a few people on how it went:

"For starters I've officially been re-diagnosed with CFIDS (fucking duh). Every time I get a new doc that happens. So, it has been confirmed again. Still got it. (Conveniently I woke up looking and feeling like hell today: puffy black eye looking bags under my eyes, non-stop sniffling & stuffiness, and my left arm can't hold anything. It's like my body knew what was happening today and wanted to make sure I couldn't pass as healthy.)

The doctor is very kind. She certainly will be a good advocate for me with the disability fight. She ordered two tests that should help prove my case: one proves that I have that heart/fainting thing, one to disprove that I have MS. She took bloodwork, 7 vials. Mostly we discussed my history and what life has been like for me, health wise. I completed a few record release forms so she can get info from my other docs to finish putting together a comprehensive picture of my medical life. After the bloodwork comes in she may add a new medication to my cocktail. We will discuss where to go from here on August 11 after she returns from vacation and sees my bloodwork. She will try to accommodate my living in Virginia and do as much as possible over the phone.

It was crazy being in her clinic. It was a maze of junky rooms and files upon files. Over the 2 hours I was there at least 10 other patients, all women, were in and out getting blood drawn or getting some kind of IV treatment. I want IV treatment. I've never seen so many CFIDS patients. There's a whole community here. In NoVa there's a "support group" via email. And that unscrupulous doctor who doesn't take insurance and charges $800 per visit.

She had signs up for clinical trials and studies. I filled out some paperwork for one that wasn't advertised, but it was studying the cells and genetic make up of us patients. (They pay healthy people $100 to donate their blood for comparison.)"

So that's the latest update. Hopefully this is the beginning of some positivity and changes for the better. 

Catch My Pain: Making My Invisible Illness Visible

I have this amazing app on my phone. It's called "Catch My Pain" and it does exactly what it sounds like. It allows me to track my pain very easily. I shade the areas of my body that hurt with a range of colors, the darker the red the more pain, yellow is little pain. It lets me write notes about my pain or body during that time and it has a checklist of what type of pain I'm experiencing.

It's a free app, but you can buy an extra feature that allows you to give a range of emotion, stress, and fatigue. I just make those notations in the "notes" section rather than paying for it. This app also allows you to list all your medications and when you take them. You can set alarms for taking any or all of the medications. And best of all, you can send yourself a printable collection of the whole thing to take to doctors. Or you can just email your info to anyone you want. It's amazing. 

So I took a bunch of screen shots and decided to share them here. It's basically one week's worth of entries. I like this concept in that it will allow my invisible illness to become visible in a way. But, this is only one aspect of my invisible illness. So keep that in mind, this is just a glimpse into the invisible part of my life.

Also, you'll see a LOT of different areas with pain. Some is caused by TOS. Some is caused by CFIDS. And some is caused by CRPS. If for some reason you find it interesting to know which is which, feel free to ask.