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.   

 

 

 

  

  

   

 

 

 

 

 

 

What's Wrong With Me (Part 1)

Do you know how long this post has been a work in progress? Since the beginning of this blog. For real. But it's time now. I've been wanting to tell you about my primary two conditions but now that has changed. It seems like it's time to tell about not just the BIG 2, but also the other stuff going on. Because there's more than my fair share.

^I really and truly can't even begin to tell you how often I come up short somehow and don't remember something I have. There are just so many.

Unless you're new to my blog, you know I love the chronic illness cat meme. Laughter is the best medicine.

I have been diagnosed with the following chronic illnesses/disorders: (In Chronological Order From Youngest Age of Diagnosis to Most Recent): allergies&asthma, chronic sinusitis, NMH, ME/CFIDS, ADHD, OCD, PTSD, TOS, and now doc's are not so gently hinting at a lovely little gem called CRPS. Hearing that get tossed onto the pile of medical shit in my life prompted me to revisit this blog.

This meme, as so many others do, made me laugh at loud (because if you can't laugh you'll just cry). I remember when I was diagnosed with TOS thinking "Oh, cuz one incurable lifelong chronic illness isn't bad enough? Really, God?!" But then time goes on and I remember that my count is already plenty higher than one or two. That list is my chronic illnesses or disorders that I live with on a daily basis (at least that I can remember right this very moment). CHRONIC health problems, not just whatever illness I've picked up along the way, like having my tonsils removed or the random lump biopsied from my breast (at age 19) or any of that.

Oh, yeah, but it does feel worth mentioning that there was once a doctor who diagnosed me and my knee injury as, "A medical mystery... But you are too beautiful to play sports anyway; you should just accept that you'll never play again, get a therapist, and go into acting or modeling." That was at the ripe age or 12 or 13, and my parents didn't sue or punch him; they listened to him and sent me to a shrink. That was at the very beginning of my knee injury, that later turned out to be a torn ACL. ACL tears are much too normal in comparison to the rest of my list, so clearly I had to mix it up there and have a record 8 surgeries on the same knee by the age of 23.

[Sidebar: In my to-be-read stack of books is Warrior Girls. When I read the book jacket depicting a story of chronic injuries in young female athletes, with a focus on soccer and knee injuries I damn near peed myself with excitement. I had to have it. Kevin bought it for me, along with a long-sleeved FCB jersey as a pre-op present back in March. But my lust for this book waned when I learned the book's central focus is on an athlete whose playing career ended after 3 knee surgeries. Warrior Girls also gives attention to a shocking entire 18-womaned roster with a combined ACL surgery count of 9. These numbers pale in comparison to what I did (stupidly, one may argue, but did nonetheless). Why wasn't I interviewed?! Seriously.

So let's get to diagnosing me, shall we? I've been jacked up medically since I was a wee tiny thing. Three times in my life, that I recall, I've spent a year or so completely laid up/ill. I'm in my 4th. And then there was definitely a 5th if you count the 2 (count em, two...) bouts of scarlet fever both before age 4 (so I'm told). I don't fear death, the way many folks do. I fear what my future likely holds: being so sick that I'm laid up in bed, all the time, forever. Death is merciful when compared to a life that steals your body but leaves your mind.

Allergies, Asthma, & Chronic Sinusitis
I was diagnosed with allergies, asthma, and chronic sinusitis all by the age of 10. I had been sick all of my life up until then. Mostly the doctors had said it was recurring ear infections. However, in children, sinus infections are frequently misdiagnosed as ear infections. Same goes for allergies and hand-in-hand with that is asthma. None of that was or is too exciting. I still suffer from these. I am allergic to most everything there is to be allergic to: grasses, weeds, trees, flowers, and all the lovely outdoorsy things. Inside, dust mites, dust, smoke, and cats do me a great deal of damage. I carry an EpiPen (an epinephrine autoinjector if you are unfamiliar) all the time. I did as a child then stopped for many years, as my allergies seemed to be managed well enough by allegra and zyrtec and benadryl. In November of 2011 I was rushed to the ER when I stopped breathing due to an allergic attack prompted by some unknown substance (comforting, isn't that?) in the Outback Steakhouse meal I was eating. I now carry an inhaler again. I usually have sinus infections all winter, resulting in antibiotics all winter. 2011-2012 resulted in 9 months of antibiotics straight. Pretty much the worst thing ever. Except for the shit that's been going on now.

NMH
Neurally mediated hypotension. This is a stupid disorder. Basically the heart and the brain just up and suddenly don't communicate properly. When that happens the blood pressure drops out of nowhere and the heart gets confused. The heart gets the signal that the blood pressure is too high and drops really low to compensate to fix it. This fun combo results in fainting.

Only I have it one better. I have the atypical version of this lovely condition. Instead of my heart rate dropping, my heart-brain communication is doubly jacked up and my heart rate spikes through the roof. It's the body's way of trying to increase the blood pressure, by pumping it out harder, faster. Only the heart pumping that fast is counterproductive: the ventricles/valves open and shut WAY TOO FAST, subsequently not getting outflow of blood and lowering the blood pressure even more. Then it's lights out.

It can happen after standing for a long time or getting dehydrated or just whenever the heck it wants. It is amplified by CFIDS and it ramps up CFIDS. Fun tandem there.

I was diagnosed after I fainted while driving. Fortunately I was only going 40 mph and it was after the big blizzard of 2003 and there were high snow drifts on the side of the road for my car to ping pong in (rather than flipping in a ditch). Three sides of my car were banged up. Just not my side. I had just passed someone going in the opposite direction, and it's a miracle for both of us that I fainted seconds after instead of seconds before.

Being 16 my parents didn't exactly believe that I had crashed my car without knowing how it happened. I told them it felt like I blinked and suddenly was in a snow drift, facing the wrong direction. They grilled me about if I was texting, talking on the phone, fiddling for a dropped CD, anything. They didn't believe me at all--they probably would have if I'd told them about the previous times I had fainted, but for some stupid teenaged brain reason, I hide it from them. I only got taken to the doctor as a way of calling my bluff. When it turned out I had a real heart condition (and a fancy new University of Maryland Medical Center pediatric cardiologist) they felt so guilty that they paid to have my car fixed. Which was awesome, but almost worthless because the docs benched me and said I couldn't drive until I went without fainting for 6 months. I still haven't gone that long, but I have learned how to recognize the symptoms of an "episode" coming, so I get to a safe, lying down position first.

Sometimes an NMH episode (as I call it) just causes bad dizziness, no fainting, especially when I feel it coming on. Sometimes it causes vicious waves of nausea. Like I said, it's stupid.

So that's it for now. Like I said, it's so much, it seems to make more sense splitting it up. Part 2 will contain the rest of the list. Thanks for reading. Xo

School's Out For Summer

I posted a status on Facebook about how Kevin, on his first day of summer vacation, brought me breakfast in bed. He always promises that this type of doting behavior (along with flowers every week or two) isn't because we are newlyweds and will continue throughout our lives. Here's hoping, because I feel so lucky to be spoiled and pampered. Let me tell you, it's not bad being treated like a queen.

After that lounging start, we went to work. It was a very physical day for me -- much more than I normally would ever pack into one day. Call it end of spring cleaning. 

Tuesday night we bought a new-to-us bookshelf off Craiglist, from a guy in Fairfax. We already have two bookshelves that are about 8 and 9 feet respectively and one in the 4 foot range. We turned a skinny 4-footer into a DVD shelf. The remaining three were not even close to enough room for the book collection of a couple who met working for their college newspaper. We are book nerds, plain and simple. And we can't even merge our collections because we have different ways of organizing our books. Kevin does what probably every normal person does (or would do if they read) and alphabetizes by author. I would, except I can't. I'm serious, with my "memory" or lack thereof I can't! I'd never find anything because I don't know who wrote it, unless it's Stephen King. So I clump my books in sections based on topics (a much broader thing to remember than a person's name!). I have sections on poetry, sports, animals (subsections: dog fiction, pit bulls, and sharks), philosophy, vampires, Stephen King, Harry Potter, Chicken Soup for the ______ Soul, mafia, religion/spirituality (subsections: new age, Christianity, and Wicca), college books I found interesting enough not to sell back, etc...

While Kevin reorganized our bookshelves and vacuumed the house, I gave our 4 bathrooms a thorough, deep scrub clean (top to bottom, every nook and cranny). Four bathrooms sounds awesome when you're shopping for a home. It is not awesome when you have to clean all of them. Halfway through cleaning the bathrooms, I took a "break" to organize our office with Kevin. Over the last two months we haven't ever put anything away in the office. We've just put office-type stuff into unassigned piles. Afterward, we went on our daily family walk, which is Blaze's long walk of the day. 

When all was done except the half bathrooms, we made ourselves a lovely dinner that happened to also require a lot of work. We had grilled kabobs: chicken, grape tomatoes, and both green and red peppers with a side of corn on the cob. Kevin cut the chicken; I mixed together a marinade for the chicken: a blend of teriyaki sauce, EVOO, egg, poultry seasoning, and lemon pepper. Kevin chopped veggies and shucked corn; I cleaned the main level half-bath. We skewered together.

We ceremoniously started our brand new grill (thanks to my in-laws!) together. Our grill is charcoal, because I'm old school and had no interest in a new, schmancy propane operated machine. Kevin's used to boiling corn and a more modern style of grilling, so when it came time to cook, I (wo)manned the grill. And while the coals were burning I cleaned the basement bathroom. 

We sat down to dinner at our brand new patio furniture (courtesy of Kevin spoiling me with stuff for the house). Dinner was fantastic. We considered our first new-grill meal a huge success, and we're very happy that grilling burgers is on our menu for next week. For his part, Blaze probably ate an entire pepper's worth of veggies, because we made way too much.  

In other backyard news, I've grown lush new grass (which is ironic because I have killed my one houseplant). We had a patch that was overrun with rocks and weeds, except for a few poorly maintained rose bushes. About 2-3 weeks ago, I poisoned and ripped out the weeds and raked the area until I got fresh dirt and sprayed out grass seed. With all the rain we've been getting it has flourished. Mommy made great grass for Blaze!

In healing news..... No, I'm still not getting any better, but my henna-like tattoo is all healed up. And quite pretty, if I may brag about my ink ;)

One more piece of healing! My scar, from the March surgery. My physical therapists always comment on how well it has healed. Nothing else is healing, so at least there is that!

PT in one hour! And pain doc, maybe resuming injections, tomorrow! Updates likely to follow....

Physical Therapy, Part 2

After my first PT session, I had a really bad night... As you know. So when I went to PT yesterday I told them about it. I said, "I know my one job while in here is to tell you if ANYTHING hurts, and nothing hurt during last session, but it was very bad after." We had a lengthy talk about it, and how some days I do have a bad day or night, just because. Or maybe the storms agitated it.

My therapist (well, student-therapist) had been planning on doing something slightly different this session, but decided we should do the exact same stuff and see if that caused a bad night again. If it did, we'd know that they needed to find a way to be even gentler, and they're already only doing Grade 1 stuff on me anyways. She said the one thing is if it causes a bad night, but then I feel some relief the next day, that's okay. "Sometimes neuro-mobes cause a slight flare-up, but then it feels better after."

Yeah, no relief today. But another bad night last night. I was up until nearly 3 am. At least this time I had enough sense not to try to tackle the stairs alone. I stayed in bed with my boys, until exhaustion took over and made me pass out. I guess next week in PT we're going to have to dial it back somehow. :(

Oh, and yes I still have all the sinusy/cold-like symptoms. But I'm still trying to avoid my 4th antibiotic in the last 6 weeks. I have to protect whatever miniscule immune system I have.