Invalid Invalid

Invalid Invalid Tip: If you're like me and use a cell phone rather than having an actual home phone line, you may want to check into seeing if your community has a Smart911 system. Cell phone calls don't automatically give the address so if you are unable to speak, they can't immediately dispatch someone to your home (or work). This service gives the 911 dispatcher and first responders vital information from a profile you create -- you can even include medical information (medical conditions, allergies, blood type, important information on medications, etc.). I just signed up for it.  

Is it nationwide? On their FAQs they explain that they are nationwide but that the local 911 dispatcher system organization thing has to sign up for it to work with their system. You can check to see if your local 911 people have Smart911 by going to their website. If your local 911 operators don't have it, you can request that they get it.

NOTE: Good Morning America put together a nice piece about Smart911:

I have no connection with this service (I just signed up so I don’t have any experience with them yet); I just think this is a great idea. If you’ve worked with the system in any way, I’d love to hear your thoughts on it.

Cathy Gallagher is the “mother” half of the mother-daughter team of writers who make up Invalid Invalid.

Just because my health makes my life complicated and often quite unreliable, cancelling things at the last minute, doesn't mean it doesn't hurt to not be included in things with friends and family. I'd rather have you genuinely ask me to be involved, even knowing I probably won't be able to go, than feel like you've forgotten me. 

Just because I sometimes (ok, often) don't have the energy to reach out to hear about your life, doesn't mean I don't want to know. I may not always respond to messages or posts but that doesn't mean I haven't enjoyed hearing from you and learning about what's going on in your life.

I have just as much of a need to be connected with people as I did when I was healthier. I just don't have as much ability to facilitate it. This disconnect, this dis-ability, is sometimes the hardest to live with. I know it’s unfair to expect you to make the majority of the effort in our relationship but I”m hoping you treasure our connection as much as I do and will forgive me for asking. So, please, if you care, keep me in your life. Keep trying. You never know when I'll be able to respond or come along.

Much love!

~ Cathy

Cathy Gallagher is the “mother” half of the mother-daughter team of writers who make up Invalid Invalid.

CANVAS: Katherine Kennedy Johnson

ARTIST: Jason Jacobson at ACME Tattoo in Kent, Washington

STORY:  My tattoo has two purposes.  First, it is a tribute to those living with Cystic Fibrosis. I met Cathy Gallagher (of Invalid Invalid) when we were in massage school together. We became friends and I fell in love with her daughter, Kaitie, as soon as I met her (back when she was only 6) and was impressed with how she dealt with living with CF. The “Just Breathe” tattoo is to honor her and every other person with Cystic Fibrosis.

I had my pain management doctor tell me that he’s not looking to fix all of my pain just move it down a notch and since I came in with an 8, moving down to a 7 meant we were successful.

Huh. That’s not my idea of success. I want to bring it down to a level at which I can live my life, spend time with my family, be productive in some way, even if it’s just being able to do the dishes or taking a fucking shower without it disabling me.

Here’s how I think of the traditional “Rate your pain on a scale of one to ten”

3: I feel so great I’m going to do a whole bunch of things -- even if it means I’ll be up at an 8/10 tomorrow because of it. (Kind of at the level of when you get a good workout in the day before so you’re sore but it’s not too bad)

4: Feeling pretty good. Maybe I really can get a job, make plans with my friends... I could actually survive this. (Think of a really bad, bad twisted ankle... but all over your whole body). 

5: It hurts enough that I can’t really ignore it but I can certainly hide it form everyone.  (On par with getting a tattoo)

6: WTF. I could try to hide it but I’m sure the strain shows and some swearing might be starting to happen. (On par with getting a tattoo... over your spine... from a heavy-handed tattoo artist)

7: Everything fucking hurts. It hurts to move, hurts to breath. The pain distracts me from everything so I can’t concentrate well... and, yes, the swearing just happens at this point with no forethought on my part. (OK, can’t think of a comparison... Oh, wait... childbirth. It’s like birthing pains, right there at the end, with no epidural)

8: Please, please, don’t make me move. Please, don’t touch me. Please, somebody fucking help me. 

9: Ok, I admit it. This is the level where I cry at everything and start to wonder why I’m even here. There is no point to this pain and it’s likely to only get worse. What is the point.

10: Can’t even think of any words... (Kaitie says she saves 10 for burning alive.)

* Why isn’t there a 0-2 on my list? I can’t even remember what that’s like so why waste time coming up with definitions for it. 

I live my life, without pain medication, at a 6-8 on most days. Pain meds bring it down to a 5-7, with the occasional day or two at a 4. When I was using a combination of cannabis (huge anti-inflammatory benefits for me), pain pills and prednisone, I had a lovely, shining period of time where I was at 3-4... until my pain management doc found out I was using cannabis and, while it’s legal in Washington state, it was against their policy to allow it (even though the amount of pain pills I need dropped by half). Plus, you can’t take prednisone (a freaking miracle drug) for long periods of time. 

So, with my many medication allergies, that brings us back to pain pills as my main source of relief...

And I can’t get my doctor to understand that for a real quality of life, for me to life something even close to being a reliable, fulfilling life, I need to find a way to bring the pain down under 5, maybe a 6 on bad days.

Why does the fact that I live with huge amounts of widespread pain mean that I don’t deserve to live even half of the life of the average person? Why does it always feel like people who live without pain are making all the decisions of how much pain it’s ok for me to be in?

Cathy Gallagher is the “mother” half of the mother-daughter team of writers who make up Invalid Invalid.