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.

Pills v Handicapped Parking

Life with an invisible illness has it's pros and cons. The most obvious positive I can think of is this ability to "pass" for "normal" or "healthy" when you're feeling awkward or shy or don't feel like talking about your illnesses. Sometimes it's nice to "pass" because it allows you a moment of feeling like you are not defined by the disease(s). The negatives are endless, but for most of us the worst is the "but you don't look sick" denial other people tell us, as if we have to look a certain way for this to be real to them. To me, in a way, this feels like victim blaming (in cases of sexual assault) or slut shaming. ***I make these analogies with no intent of disrespect to victims of the above experiences. I say this having experienced both victim blaming and slut shaming. It's just my experience that the feelings are similar to the "but you don't look sick" comments. The common thread there is this total invalidation of another persons truth, in this case mine.

I've ranted about handicapped parking on Facebook and I've alluded to it here: http://lifewouldkillme.blogspot.com/2013/08/psa-its-not-just-handicapped-parking.html

You can walk from the back of the lot to here with tiring or fainting?! No, YOU are so lucky.

I try to keep good perspective on it, but that's easier said than done. It really irks me. This is coming back up because of something that happened, or rather didn't happen, on my birthday.

Kevin and I went out to dinner in Little Italy. The alarm he has set to go off every two hours (all day) went off toward the end of our meal. Remember what I said about being able to "pass" for "normal" when you're feeling awkward or shy or don't want to deal with your illnesses? At a nice dinner on my birthday would be a great example of a time when I'd like to enjoy pretending to be normal.

(If you read my Facebook post that night, I was enjoying laughing at the restaurant owner asking if we had a babysitter then 180-ing to 'oh it's your 21st' when I said it was my birthday. I liked that. I don't mind passing for having a kid or two at home, because the reality is I'm not healthy enough to even consider having children at this time. And if my tired face looks like that of a loving mother, then it's a special, beautiful kind of tired-looking.)

Anyways, nice dinner, birthday... I hesitated on pulling out my pills. I told Kevin, as I have a time or two before, that I hate pulling out my pill bag in public. There is nothing that screams "I'm sick!" louder than my pill bag. Figuratively speaking, of course. However my pill bag actually IS noisy. It's a gallon-sized Ziploc freezer bag. And then the cases that the pills are in crack open and snap shut. And the pills jingle-jangle up against each other. There's no subtlety to it at all.

The view from one side. My 4-dose-a-day pill dispenser. If the alarm goes out in public, this is the bad boy I have to pull out. And I always do it awkwardly, shamefully announcing to the room that though I don't look sick, turn me inside out and it's a different story. In this you'll find nerve blocks, muscle relaxers, extended release pain pills, short release pain pills, anti-virals, probiotics, allergy meds, etc etc etc...

Now, if I'm fumbling with that 4-dose-a-day guy, this is the side you are seeing. My "extra" pill jars that aren't daily takes, but pills I have to carry around just in case. My large 1-dose-a-day pill dispenser for bedtime (because my nighttime medications are way too large to fit in the smaller boxes of the 4-a-day case). A thermometer. Purell wipes. Bacitracin. An antibiotic super-strength version of bacitracin (because with my immune system, cuts aren't normal cuts--they are little vestibules for massive infections to grow in). Nasal spray. Eye drops. Chapstick (dry mouth/lips is no joke). Headphones for when I go to PT. Ponytail holders that I usually wear on my wrist, but sometimes take off because of swelling. Oh and that manilla envelope visible on both sides of the bag, that is my most recent letter from the Social Security Administration denying me coverage for disability. (I don't save it because it makes me feel good; it has instructions for what to do next.)

Anyways, the point is... I get really embarrassed to take out my pill bag in public. I tell Kevin if strangers mistake my gained weight for pregnancy I'll go along with it rather than go through the awkward correction. I tell Kevin if strangers mistake my pills for cancer medicine I will go along with it, rather than trying to explain my actual illnesses (which no one has heard of and few take seriously). I don't mean to make light of cancer, it's just that people understand cancer. Cancer, unfairly, hits people of all ages. So strangers can wrap their heads around that. Also, some types of cancers have cures and that innately makes people more comfortable with illness. But with my illness, people desperately try to find a cure and do the research I long ago gave up doing, because it's too hard to accept that it doesn't have a cure. I imagine it makes people feel very helpless that there isn't a cure, because that's the part a lot of people get stuck on.

The thing that hit me when I finally took my pills at my birthday dinner was no one had ever asked. On the average summer day, I start taking medication at 8:30 am or 10:30 am. From there I take medication every two hours, no matter where I am. The number of people who potentially see me taking pills is exponentially higher than the number of people who see me getting in or out of a car with a handicapped placard. Yet I can't count the number of comments or looks I get over my handicapped tag. That number shouldn't be higher. Isn't there some law of averages? 

You know that feeling of being watched? Similarly, you know that feeling of walking into a room and all conversation stops, so you know you were being talked about? Well, call me paranoid if you want, but that's what happens. You can feel people staring, for half a second, and then diverting their eyes away. Only it's every stranger in the dining room at the same time. Conversations momentarily stop. If the waiter was on his way to my table he U-turns for the kitchen. 

For some reason this all hit me at my birthday dinner and I got really upset about it. I started ranting to Kevin about it. "Why do people ask about my handicapped pass but not my pills? Why does that happen? What is the difference? No one has ever come up to me and confronted me on taking my pills. No one has told me shame on me for taking my medicine. No one has ever asked me to justify my medication to them, though people feel entitled to ask that of my handicapped tag. And there's no way I just happen to encounter nosy, judgy people at the car but not anywhere else. No way. So what the fuck is up with that?"

And then I answered my own question, and the answer was even more upsetting to me. "Pills, in strangers' minds, are tangible proof that I'm really sick and it makes them feel awkward and intrusive to ask? Because it's real to them, that amount of medication is really real and I look too young to be this sick so they get uncomfortable. But the handicapped tag, I could just be some punk illegally using her mom or grandma's tag. Fuck that."

So, this is both a rant and I guess an repeat PSA like the old blog post I linked earlier. Think. Be kind. Stop judging what you don't know.

Today, just for right this moment, I'm going to use the faceless disconnect of the internet for mini-bravery, or at least not being ashamed. 

These are my pills (minus a few bottles). 

This is MY handicapped tag. My nighttime pill case is blocking the numbers so you don't steal it :)

And this is my inspiration today.

30 Day Chronic Illness Challenge (Days 22-24)

Day 22:

Well, every doctor marvels at how "interesting" I am or how "fascinating" the way my symptoms present is to them. 

Sometimes they get real honest and tell me I have the worst case of ______ they've ever seen or my conditions are so rare and bizarre.

A few doctors have tried to find me a new diagnosis because they are a decade or two behind the medical community and don't really believe in CFIDS.

 

Day 23 & 24:

I don't and I haven't.

30 Day Chronic Illness Challenge (Days 18-20)

Day 18:

Better? No. But I have become a deeper person. I spend more time contemplating the meaning of life and thinking about what matters. I live with extra intention and put emphasis on things I find to be valuable and meaningful. Similar to people with terminal illnesses, I am constantly aware of the importance each moment holds. I am aware of the limit of quality years that I may have. Most people seem to try to hide from and ignore the fact that eventually they will die. But living with an incurable, chronic, debilitating, invisible illness, there is no way to hide from the truth about life and death. 

Having this knowledge does not make me better or worse than anyone. It just makes life different for me than it is for most people I know.

Day 19:

Scared. Pessimistic (or realistic?). Terrified. Doomed. Hopeful. So many feels. Contradictory feels. Mostly, I try not to picture or plan for a future, because I might not get much of one. 

Day 20:

I recently started talking to some women in an online support group for CFIDS, via email. It's nice conversing with someone who deeply gets it and has been through it all too. 

I've also met other CFIDS patients when I've done events as a "patient spokesperson" of the illness. It's awfully validating sitting on a panel with other sufferers. In day to day life, you just don't see other people with it so you tend to get overly excited about fellow patients.

I chat with people via the Instagram community about life with TOS. That's cool to see how much power using a hashtag has, when it brings together all these patients of this rare disease. 

30 Day Chronic Illness Challenge (Days 1-4)

 

This is not going to take 30 days, because some questions will either have already been answered or I just won't feel like answering... It may be less than 30 days because I'll answer multiple in one day & skip some. Or it may take more than 30 days because I'm easily distracted and disabled. So there you have it. But we shall start now.

Day 1: You already know my name is Shanley. You also know the illnesses I have from my post "What's Wrong With Me".

Day 2: The aforementioned post lists all my diagnoses and gives details of life with half the list. There will be a part 2--I promise.

Day 3: Redundant

Day 4: Some are awesome. Some suck. Most guys used to break up with me over it. Then this one guy decided to marry me because of it, so.... lol ;)  I've said this before, there are mainly 3 types of people: 1-those who don't know what to say & pretty much never talk to you because of it, 2-those who try really hard to empathize but end up saying the most insensitive things (coming from a place of good intentions), and finally 3-those mythical, majestic people who say the right things!

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

Looking sick

My diseases all fall under the blanket category of invisible illness. I often am told I "don't look sick" but I am told I look tired. A lot. I've also gained a significant bit of weight. But most people tell me I carry it well or that it's not too noticeable. I, of course, am full of depression and low self-esteem and find this hard to believe. I see the extra pounds on my body and the bags under my eyes.

I wear make up with much more frequency now, because I need that confidence boost of feeling pretty. I NEVER wore make up all through high school and college. I also wear make up because it gives me more motivation to not cry. There's not much more unattractive than teary mascara streaks.

A dear friend sent me a link to this blog today: http://mywifesfightwithbreastcancer.com/. She challenged me not to cry while perusing it, and she successfully predicted I'd fail at that attempt. I give you all the same challenge. I also take with me, at least for right this moment, the inspiration to be even more open and vulnerable via this blog.

Occasionally I post less than beautiful photos on here, on injection day or whatnot. But I still really favor pretty pictures, both here and on Facebook. I'm trying to have the courage, in a multitude of ways, to make my illnesses less invisible. So let's do it.

Sometimes I wear makeup & try to be pretty or sparkly or at least look AWAKE:


Right now I can hardly keep my eyes open. This is legitimately how I look in this moment:
 

And if I TRY to keep my eyes wide open this is how it turns out:


Let's be honest... Those are some serious bags under my eyes. I'm going out to dinner with family. And I will be putting make up on in the car.


But the important message here... That brave man and his tragic loss of his wife. We live in a society that tries to look away from the sad and yucky things. We live in a culture in which curvy women feel the need to defend their bodies. And sick people feel the need to hide it. The message is that vulnerability is BAD. And I'm trying to fight against that.

Maybe letting people in is a good thing. Maybe sharing your weakness can be strength. Maybe. Just maybe.

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.

Days of Rest, Physical Therapy, Sinus-y, and Stairs

The last few days I've been developing a sore throat which keeps getting worse and worse. It has grown to include ear pain, sinus pressure, mucusy congestion, sneezing, and all sorts of other fun symptoms. I regularly take allergy medicine, both a preventative in the morning and Benadryl at night. I'm also fairly certain the monsoon rains have temporarily wiped out all allergens. I'm also on an antibiotic (for other stuff) so I'd like to think I didn't manage to get a sinus infection while on that. Unfortunately a sinus infection is exactly what this feels like. But who gets those in June? Ehh, people with no immune systems I guess. Still, I'm trying to see if this yuck will run it's course, because 3 antibiotics in one month seems like plenty to me. A fourth seems like death to the traces of whatever immune system I have left. So I'm taking my nasal spray and drinking my homemade tea, a blend of eucalyptus and mint. 

Eucalyptus is a decongestant and an expectorant, with natural antibiotic properties. Mint can also relieve congestion in the respiratory tract, so it's useful in treating bronchitis, sore throat, or a cough. It also can be used to reduce a fever. Mint is a soothing herb and can be used to treat headache, backache, and neck pain. So this is my super tea. 

I love that the steam is visible in this picture. Piping hot. 

In other fun news, I fell down the stairs last night. Sometime after 2 am. I wish I could tell you that's uncommon, but it's not. That's why I almost always use Kevin's help to go up and down stairs. And if I'm being "independent" I scoot down on my butt. Or go very slowly, with a death grip on the railing. 

But last night, in the middle of the night, nearing the witching hour, unable to sleep, in pain, for a foggy moment I thought I was a normal person and approached the stairs as such. Luckily for me and tragically for him, Kevin is a light sleeper. He woke when he felt me get out of bed. I can only assume he figured I was going to the bathroom and didn't think twice about it. Until he heard some thuds and crashing sounds. Then he came running --yes, because he's a normal person he can RUN down stairs and be okay-- to my aid. He tended to me, asking what hurt and hugging me. I cried, half out of pain and half out of frustration. 

After making sure I was okay, Kevin asked me what I needed so badly from downstairs. I told him an ice pack. I've been in extra pain since Thursday, because of starting Physical Therapy, and my session earlier in the day was responsible for keeping me up at night. So he got me an ice pack and took me upstairs. 

As is typical for us, I profusely apologized and thanked him, feeling terrible he has to deal with such events regularly. And he told me I had nothing to apologize for, he loves me and it's not my fault. 

This is a concept I'm still working on learning. I'm in the process of embracing this lesson. 

As I'm writing this blog, my little monster is staring me down and whining and whimpering. We JUST went outside so he could go potty, and he got a treat when we came in, so I'm not sure what he wants, other than for me to stare back. 

Anyways, back on track... Physical Therapy. I started Thursday and it was hellish. Day 1 of PT is always an evaluation to document where your body is when you begin treatment: range of motion, pain scale, severity of symptoms. So they did all the painful stuff my doctors do, and then some more. They warned me I'd have a rough few days following, and they were right. It certainly caused a flare up. 

The good thing was they can feel just how bad I am. It's not me saying I'm in this much pain, they can literally feel it when they touch my body and move my neck and/or arm. I can't begin to explain how validating that is. There are definitely days when people with a chronic illness (or maybe it's just me) feel like they must be crazy, like it must be in our heads. But then you see a doctor who diagnoses and evaluates based on touch rather than listening to your description or looking at X-rays and your nightmare is confirmed to be real, and really that severe.

They really can and did confirm I have TOS, still, just as bad as I did pre-op, and if anything I have more symptoms from removing the muscle. Not TOS symptoms, but pain in my neck. Apparently the middle scalene (the muscle I had removed) is partially responsible for the movements of the cervical spine. Meaning, for the last 2 months my spine hasn't been moving the way it used to, thus causing extra pain. 

Because I am so "pain dominant" and have this particular diagnosis, the protocol they follow with me will be remarkably slow and subtle. They said this isn't a condition they tackle with a "no pain, no gain" approach. Most of my session involves laying there and having specific nerves gently manipulated by the therapist. They've instructed me to tell them if it hurts, even ever so slightly. Everything (except that initial eval) should cause me no pain or feel slightly better. 

Yesterday's maneuvers didn't hurt while I was there, but apparently they did aggitate me. Remember, I fell down the stairs trying to get an ice pack for the pain. I can't even begin to describe how...nothing these maneuvers are. I mean, one is literally wiggling my pinky finger. Yet the therapist tells me they can feel my body resist and tense up, if they move a smidge past the gentlest pressure and angle. It makes me feel slightly pathetic, but like I said, it's also incredibly validating to know the hell I've been going through is 100% real and I'm not crazy. They also can feel that my top rib on the left side is at least a thumb widths higher than on the right side. So that's definitely part of the problem. They are optimistic that they can help and said just because it's that bad doesn't mean I definitely need it removed. 

My therapist is very knowledgeable in both TOS and CFIDS, so I feel like I'm in capable hands. It'll be slow work, but if anybody can help me to avoid having my rib removed, I believe it's the people at this practice (Fusion Physical Therapy). Because the top left rib is so high, if they can help, I'll have a life of maintenance ahead of me -- it won't be a few months of PT and then I'm cured. But hopefully I'll get to a point where I can function on that maintenance program. 

Partly because of PT, the last few days have been a lot for me. Like I said, I started with my hell-eval on Thursday. On Friday I had a rough doctor's appointment that also exhausted me and drained all the energy from my body. Kevin is going through a lot with the end-of-school-year hustle and bustle, so he had no complaints about just resting Friday afternoon/evening and all day Saturday. We made pancakes for brunch both days, but besides that really laid around doing nothing, just relaxing. We both needed it, but even that wasnt enough for me. 

Sunday was Froehlich Family Day at Nationals Park (for the early game). Once a year, my father-in-law treats everyone to a game together as a family. Tickets, food, and drinks are all on him. He and my MIL have club level season tickets, but for this game we were all together in section 126, just off the first base line in foul territory. My brother-in-law and his wife came and brought our nieces too. It was really great family time, but a very hard day for me. It was sweltering hot, and some of my meds make me hot anyways. Plus being run down from Thursday and Friday. Plus my medicine that makes me sun-sensitive. I spent 2 innings up near the food shops, just to get a break from the sun, but I did manage to last the whole game. 

That's it for my updates. But before I end, I want to tell you why Blaze was staring and whining earlier. He didn't stop, so I finally went over to him because sometimes if you do that he'll lead you to what he wants. So he took me to the stairs to go to the basement to get our back, paused, then took me to the front door, indicating he wanted a walk. I told him we had to wait for his daddy to get home from work, for our afternoon family walk, but that we could go out back again. I figured I must've unknowingly rushed him and he needed to poo. So I took him out back --again-- and sat on the HVAC fan to stay out of his way. He sniffed and explored and seemed quite leisurely. Not needing to poop. He settled himself down on the slab out back and laid down to sunbathe. He had always loved laying out in the sun, and it's a gorgeous day. I tried to go inside and sit just inside the door, since I'm sun sensitive, but he followed me inside. So we compromised. I opened the living room curtains and window and put some pillows under him so he could lounge on the top of the couch, as he has always liked to do. He thinks he's a cat. The compromise sufficed. He was happy to get sunshine and fresh air, and I was happy for peace and quiet. 

Chronic Illness Meme & Johns Hopkins Preview

First I wanted to share a new meme discovery: chronic illness cat. You should count on seeing this guy a lot. He is wonderful.

Examples:

Second, I wanted to tell you about my upcoming doctor appointment. I meant to post way earlier in the day but now it's silly because the appointment is in like 9 hours. 

I'm behind my self-set schedule because physically yesterday and today have been very bad days. Yesterday was great going to the game, not so great that the Nats lost, but just took a lot out of me physically. I couldn't even stay awake past I think 8 or 9... And then today, my stomach was just... Ugh. So I just didn't get around to it. That's how this stuff goes in the life of a sick kid. Frame of reference: I actually had a visitor coming over today -- I never have that -- and I had to cancel because I just wasn't up for it. Fortunately my friends are loving and sympathetic about my problems. So it was a bummer, but ok.

Anyway... tomorrow is my appointment at Hopkins. This is the doctor whose approach to TOS is removing the rib AND the muscle, not just the muscle (as I had done). My surgeon told me he didn't see a problem with my rib, but since I wasn't getting better and he had no help to offer me, it was worth seeing if they saw something he didn't. (This paragraph reminds me that I have a draft started about my actual illnesses, really detailing what they are, what my symptoms are. I use the acronyms a lot, and my closest friends know what they are, but since I've recently learned people who don't know me that well also read --and thank you, btw-- I need to spell some things out for ya. Remind me to do that soon if I forget!)

Back to tomorrow, I've *really* been trying not to get my hopes up. Frankly, I don't feel anyone in the medical community has given me a reason to expect much. I specify in the medical community because my adorable father likes to tell me that he knows I'll be getting better, without even attempting a logic-based argument. Just cuz. He's sweet. Irrational, but sweet. So we know odds are very strong that nothing will change tomorrow, short of being extra depressed for a few days. Because if another doctor says they can't help me, that's inevitable. Or I could be planning another surgery... Who knows?!

A few hours will let us know. And you'll probably be third to know, after calling Dad and Moo.... Or I'll be lazy and you'll have to wait super late again like you had to for tonight's post.


**I'm posting this blog after midnight, so technically it changes my days, but when I said "today" I was referring to Tuesday and when I said "yesterday" I meant Monday. Just to clarify.**

30 Things About My Invisible Illness(es)

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is: CFIDS (chronic fatigue and immune deficiency syndrome) and TOS (thoracic outlet syndrome)

2. I was diagnosed with it in the year: 2002 and 2012

3. But I had symptoms since: forever for CFIDS and only recently for TOS

4. The biggest adjustment I’ve had to make is: just changing my entire life

5. Most people assume: that I'm healthy. People always tell me how tired I look, but that's it.

6. The hardest part about mornings are: from the CFIDS: how stuff and achey my joints are and from TOS: staying awake long enough after my various alarms to get through my pills schedule

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: my iPhone

9. The hardest part about nights are: waiting for the medications to knock me out as my brain races through horribly sad and scary and depressed thoughts about my future

10. Each day I take 25 pills, and a few spreads of my ketamine cream

11. Regarding alternative treatments I: desperately need to find out if my insurance covers them.... I've tried acupuncture for other things and had no success but I need some serious help and Western medicine has failed me thus far

12. If I had to choose between an invisible illness or visible I would choose: invisible. For one thing, it's the "familiar evil" so I know what it's all about. Also, I hate when people treat me differently the second they find out I'm sick. Like suddenly I'm fragile or no longer an equal adult.

13. Regarding working and career: I've lost mine and I desperately hope to get it back

14. People would be surprised to know: how bad it really is, because I put up too tough of an exterior and avoid being vulnerable. However this blog is helping to change that.

15. The hardest thing to accept about my new reality has been: 1-that my health is totally public to people I barely know (via Kevin sharing it very openly with all of his friends even before the wedding) and 2-the complete dependence on other people, usually Kevin (so I can't be mad that he shared it, because it's now his story too). I can't drive or bathe myself or dress myself. And I am a VERY independent person, or at least I was... Maybe the hardest thing to accept really is the loss of the self-identity I had. I'm not the person I was...I can't be, my health doesn't allow it, but my heart still hold onto that.

16. Something I never thought I could do with my illness that I did was: keep on fighting, after surgery failed me

17. The commercials about my illness: don't exist. My invisible illnesses aren't the "popular" or well-known ones. They are both rare.

18. Something I really miss doing since I was diagnosed is: playing soccer. All forms exercise really.

19. It was really hard to have to give up: coaching

20. A new hobby I have taken up since my diagnosis is: this very blog.

21. If I could have one day of feeling normal again I would: drive and run and play soccer all day

22. My illness has taught me: a lot about who I am, more about who other people are, and even more about the point of life and how to live it

23. Want to know a secret? One thing people say that gets under my skin is: "if it were me, I'd do ______" Biotch, it isn't you and you don't have one single effing clue how you'd survive in my shoes. Don't tell me how to live when your health is perfect or even normal!

24. But I love it when people: back up their offers to help. Everyone says, "oh I'm here if you need anything" but those are usually empty words. I can't garden, do yardwork, fix stuff around the house, drive myself places, grocery shop, walk a flight of stairs alone, carry my laundry basket, etc etc etc. And I'm lonely. My world is very small. So go ahead, help. Show up. Not many people do.

25. My favorite motto, scripture, quote that gets me through tough times is: "everyone who lives, dies, but not everyone who dies has truly lived"

26. When someone is diagnosed I’d like to tell them: practice embracing/accepting change. Everything in your life will change and you can't stop it. Much easier said than done.

27. Something that has surprised me about living with an illness is: that someone still loves me, instead of leaving me for being sick, like everyone else did in the past

28. The nicest thing someone did for me when I wasn’t feeling well was: Kevin. Marrying me. And taking care of me daily ever since.

29. I’m involved with Invisible Illness Awareness Week cuz I like who blogged for it and I really like a fill-in-the blank form to share some of my own issues **it's not IIAW right now

30. The fact that you read this list makes me feel: like you're actually listening and like you genuinely care, if you've made it this far. So thank you.

It's Me and You

Everyone comes up with their little tricks to cope through the really hard times. It's a fact of life for people like me that there will be horribly challenging moments and we need help getting through them without have a complete mental breakdown.

For me, lately at least, my truly horrible moments seem to be when the pain, for whatever reason, escalates suddenly, out of nowhere. I live in constant pain and I'm on a bazillion medications. So I can deal with the pain. Except for the sudden onset escalations. Those send me into mini-panic attacks (because the pain alone isn't bad enough, stupid body of mine).

The triggers for sudden onset pain are typically sudden cold air/wind, when someone accidentally touches my tender spots too hard (pat on the back, squeezing hug on that side), when I fall, when I almost fall but catch myself with my left hand (stupid body reacting stupidly!), and finally the "just because it happens" trigger. I also have the mini-attacks from bad news/emotional pain.

I can't prevent any of these. But when they happen my slight familial tremor I inherited from my mom goes crazy and one body part shakes as if I'm seizing. Literally, if I'm in bed with the tremor, you'd think you were in one of those tacky old motel rooms with the vibrating bed.

In addition to the tremors, my reaction to the pain is tears. Duh, right? Kevin and my dad have gotten really good at identifying the onset by the look on my face (if they aren't by my side for me to just tell them). I clench my face, my entire body as well, but really squeeze my face, refusing to cry until I'm somewhere safe. A private room. The car. Just not in public, not in the middle of my grandma's 90th birthday party, or Opening Day for the Nats, or Easter at my cousins.

I know I need to be hugged. Held. Loved. Reassured. I used to be a "tough girl" who didn't want people to see me cry, ever. If I had to cry I would run away alone, lock myself somewhere totally private. Now when this happens, Kevin or my dad or whoever is emotionally closest to me at the event damn well better take me away. I can't be alone with these tears. I have to be held, so I can start feeling safe.

It is a slow process. It gets worse before it gets better. Once I'm in the private safe place to cry I let go of the tension and my tears come cascading out. My body shakes with sobs, even if the tremor doesn't kick in. My hair gets soaked by my own tears. Kevin's shirt gets drenched. I feel as if I can't breathe, I feel as if I can't possibly survive the next few minutes or hour. I feel like I'm going to die.

I am in that moment trying to rescue myself from drowning in my own pain. I can't possibly do it. When this happens and I'm alone, I inevitably cry and sob until my body is exhausted and I fall asleep. But the best way I survive this, is with Kevin in charge.

We learned the best technique on Opening Day. We were having a great time and it was my first game at Nationals Park. It was actually really warm, even hot, most of the day. I was loving every minute of the experience, sharing one of K's favorite things with him. Watching Bryce Harper hit TWO home runs on Opening Day. What a day!

The Nat's won and we were in celebration mode. Everyone was. We had to wait to meet some friends so Kevin could give them the shirts he made (very clever, about Pitcher Ross Detwiler, "Like a Ross"). Anyways, we were waiting, waiting, and it started getting really cold. And then windy. Double trouble for me. Kevin saw what was happening, and rushed through the exchange with his friends. I tried to smile and greet them nicely; he has wonderful friends.

We rushed to the car, which was parked reasonably close, but at that point it felt hours away for me. I failed my usual steely face and tears were streaming down my face as we navigated the crowd. I just kept my head down and trust Kev to guide me.

Once we made it back to the car, I was immediately relieved to be out of the wind. We laid my seat back and I let the waterworks start. Kevin held me, petted me, reassured me. He looked into my eyes and showed no fear of his own. He told me it was going to be okay, over and over. He said, "It's me and you baby, it's just me and you. It's going to be okay, because it's me and you. I'm not going anywhere. It's me and you."

Time passed. I calmed some. His parents came to the car to drop some things off for us. His mom reassured me and patted my hand through the window. His dad gave me a Nats hat, my very own! They understand remarkably well for me so new to me and my stuff. After they left, Kevin repeated those lines a few more times. The pain was still too much, but I was calm. I was back.

I told him, those words were the best comfort/reassurance I've ever gotten during any panicky times. Most guys I've dated ask me "what am I supposed to do?!" even when I'm halfway comatose after fainting. And once they see something like this, they run away. Men have always run away from me because of my health problems. Kevin is the first to stay. And being reassured, "me and you baby, just me and you," reminded me I'm not alone. I never will be.

Things...

A picture is worth a thousand words. So here are three.

Real time

9:29 EST Sunday night, May 5, according to my iPhone.

Where I am going? Home.
From where? The ER
Why? Because my ankle is the size of a baseball.
Why? Because it's infected.

How did I get infected? Because I wore a pair of heels, and they rubbed my foot raw (as the price of beauty is pain).

How did it get SO swollen? Because I thought it was just a scrape and didn't feel the pain until it got SO bad because I'm on an obscene amount of pain meds already. This incident happened days ago.