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.

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.   

 

 

 

  

  

   

 

 

 

 

 

 

But Where Are The Good Days....?

I constantly forget CFIDS symptoms that are legitimate. So I'll have these symptoms, then I'll freak out thinking it's something new, only to find out it's old hat. CFIDS it is. One of those "forgotten" symptoms is an upset stomach. I get it in a very special way. I get agita, all the time. Today I threw up in my mouth three times. That's a normal occurrence for me. Lately I've been having severe nightsweats. Yet another CFIDS symptom that I forget about, until I wake up drenched in what feels like a gallon of sweat. There are so many more symptoms, that majority of which I suffer from.

But this post isn't really supposed to list my CFIDS symptoms. This is more of a "checking in" post, catching any readers up to date on what is going on with me, physically and emotionally. If you care to know the truth in all it's forms, continue to read. If not, check back at my next posting?

On June 26 I had a horrible, sudden onset, muscle spasm and my trapezoids locked up. The only position that I wasn't in pain was tucking my chin to my chest. It was severe and paralyzing. Feeling hopeless and terrified, Kevin called my Physical Therapist, Travis, who gave us some suggestions: stretches & heat, but the muscles wouldn't release. I was in agony. I was sobbing, with bits of calm or just trickling tears, then sobbing more and more. 

So I went in to physical therapy. Travis did manual manipulations and while I was there my pec-minor on my left side started to spasm as well. (Incidentally a pec minor spasm can reproduce some of the same TOS symptoms, soooo awesome.) It was severe enough that the PT students could see my shoulder raising off the table. Travis got that to release but my traps stayed steel-rod-like. He hooked me up to electrical stimulation, which usually I have a high tolerance for, but I didn't that day. I made them set it much lower than normal. Within two minutes my pain got so much worse. The tears came rushing back. Kev went to get them, and at that point Travis said my pain was crossing the line and I needed to go to ER or Urgent Care. He said e-stim is a pain relieving modality and for that to set me off, I need to see a doc to check for fever etc....

I went to the particular urgent care place he recommended and the wait wasn't too long but it was awful because of how I had to curl up and tuck my chin to get pain relied. The doc prescribed me a stronger muscle relaxer. It definitely helped. I'm now only sore like I did a hard work out using those muscles, so I'm definitely getting better. Since then my PT appointments have only been light and gentle, to be careful not to flare anything up again. Since then I have had frequent, more minor spasms of my lats and my traps continue to feel as though I went through a strenuous workout.

I have no answers for what is going on with my back and neck muscles. I also have symptoms of TOS that I shouldn't be having this far post-op (blood pressure affected and other stupid things). There are no answers for that either. I've always been a medical mystery and it seems I always will be one. 

What came out of this was obviously more questions. The biggest of which was "but where are the good days?" I believe I was reassuring Kevin that this was just a freak bad day and I'd be better soon. Then he asked me, "but where are the good days?" In truth, I was reassuring myself as much as him because I didn't know why this was happening either but I wanted to believe what I told him, that it was just a bad day. I want to believe I'm due for so many good days. I wanted to believe it because I ask that same question both internally and out loud all the time. I get sad and scared and angry and I need to know where the fucking good days are hiding. The state of existence in which I live in is full of fear and unknowns. I do have good days (relatively speaking), but the bad days are overwhelming.

Something positive has come from this. It may be temporary, I don't really know. It has only been three weeks since this freak incident. But at least for now, Kevin and I are both consciously focusing on a change of perception. We are choosing to see more of the good. It's our way of creating good days rather than waiting for them to magically happen. Every day has good and bad in it, whether you are 10 different kinds of broken like I am or if you're a "normal" person who commutes to work. Good and bad everywhere. But the overall theme of the day, that's our choice. Believe me, I have enough bad that I cannot control--the last thing I need is to put blinders on and miss the good that is there.

So we are celebrating the small victories, whether it's something fun that I'm able to do or whether it's doing productive things. We keep some structure in my days so I have a routine conducive to my limitations, which helps maximize success. We are making our own happiness. 

It's all perception. Instead of choosing to be bummed when yardwork wipes me out and causes immense pain, we make that a good day. Pain and exhaustiion, good? No, not really. But it's definitely good that I felt enough strength to do some of the yardwork. The alternative is me being too tired/weak to get out of bed and spending the day laid up watching life go by. And the structure helping this is scheduling an evening of rest that night and a lazy day-after. My body being dead after that work is inevitable, but it is a choice whether I celebrate the successful work I did or whether I pout and dwell on the post-exertional malaise. Change of perception, bam! 

So where are my good days? They're somewhere in my mind in between the bad days and the pity parties. They're in beautifying my home with roses, lilies, and butterfly bushes. They're in spending a long weekend with family, even if my sleep schedule confuses everyone a little. They're in a day at the beach with my nieces, even though my body had to be told to suck it up to get out of bed.