The aim of the wise is not to secure pleasure, but to avoid pain. – Aristotle

I would be a damned liar if I came to you, dear reader, and said I wanted to be sitting here writing this entry tonight. In fact, given the choice, I’d sooner perform my own lobotomy than attempt to string together coherent words beyond a conscious stream of expletives. To say that it had been anything less than a 15 out of 10 this week as far as fed up, in pain, inane activities make me stabby and other such pleasantries go. Really and truly, life is currently a bitch, and not of the submissive variety.

So, what do I do when I’ve hit the end of my rope? Focus my attention elsewhere.

One of the few blessings that have come from dealing with chronic pain and illness is a slowly growing digital circle. For those that live the life, I don’t have to tell you how isolating it can be. Cutting yourself off from the real world because of the weight of the worry, the shame and guilt of not being able to maintain “normalcy” in relationships. For someone who had a minimal social circle to begin with, losing friendships seemed like nails in the coffin once upon a time. Let’s just leave it at the fact that I am delightfully awkward, and my brash sarcasm and Uh Huh vocabulary (if you get the reference, magical bonus points) are worse when I don’t have the luxury of a backspace key at my disposal. It’s pretty safe to say I’m not exactly everyone’s cup of tea.

The internet has long been my playground. Cyber realms are much easier to navigate without having to make excuses for the crippling anxiety that makes for tics and uncomfortable outbursts, physical symptoms of medical junk are hidden away in the ether. Essentially, the internet has given me a life that my illnesses otherwise interfere with. Reaching out to others with my conditions has opened doors to treatment possibilities and doctor referrals. Finding support groups has slowly added to my social circle, finding kindred spirits hiding there among the text that draw my heart out and build up new friendships based on understanding rather than assumptions. To find those rare gems is a kind of healing, I’m sure.

One of the most unique facets to these friendships are the stories behind the words on the screen. The multitude of roads being traveled by the people you grow to care for are astounding and often put some perspective into the fact that, as isolated as you feel, you are NOT alone in that feeling.

In the month of September alone there are an overwhelming number of causes assigning themselves timeslots for awareness…

Childhood Cancer Month (Gold): www.candlelighters.org/awareness/childhoodcancerawarenessmonth/tabid/406/default.aspx

Leukemia & Lymphoma Awareness Month (Green or Orange): www.lls.org

National Atrial Fibrillation Awareness Month: www.stopafib.org

National Infant Mortality Awareness Month (Pink & Blue): www.healthystartassoc.org

National Sickle Cell Month (Burgundy): www.sicklecelldisease.org

Ovarian Cancer Awareness Month (Teal): www.ovarian.org

Prostate Cancer Awareness Month (Light Blue): www.zerocancer.org

Reye’s Syndrome Awareness Month (Blue): www.reyessyndrome.org

National Suicide Prevention Week Sept 5-11 (Yellow): www.suicidology.org

National Celiac Disease Awareness Day Sept 13 (Light Green): www.csaceliacs.org

National HIV/AIDS and Aging Awareness Day Sept 18 (Red): www.theaidsinstitute.org

National Rehabilitation Awareness Celebration Sept 19-25: www.nraf-rehabnet.org

World Alzheimer’s Day Sept 21 (Purple): www.alz.co.uk/adi/wad/

National Mesothelioma Awareness Day Sept 26(Purple): www.curemeso.org

World Heart Day Sept 30 (Red or Red & Blue): www.worldheart.org

And there are more,
Mitochondrial Disease Awareness Week Sept 20-26 (Green): http://www.mitoaction.org/mito-faq,
and Intracranial Hypertension Awareness Month (Blue and Green): http://ihrfoundation.org/
are both two that are near and dear to my heart, personally, and are rarely mentioned beyond the confines of the support groups for those that are dealing with these rare issues.

Please, if you have a moment, take some time to learn more about some of the causes this month and reach out to someone that may need a listening ear. You never know, you just might end up with a beautiful friend.

Advertisements

I am not invisible.

It’s been 15 years. 15 years since the scary onset of symptoms that could no longer be ignored as a flukey coincidence. 15 years since I learned the value of being able to rely on your body, and the despair of having it actively working against you. 15 years since I had to start redefining what a “good” day was for me.

I don’t have anything inspiring to say about perseverance. The mentality to just keep going until I dropped isn’t something I strove for, and it most certainly is not as admirable as people seem to think it is. In 15 years I can finally see the world of damage I do to myself every time I ignore flares and try to just keep going. It’s not courageous, I’m not a warrior, I’m not strong, I’m just a degenerating version of the old me clinging hopelessly to the want to be “normal”. This week, especially, has pointed that out to me in glaringly obvious ways.

In the coming weeks I have such an amalgamation of appointments for my various issues that I feel like I’ve reversed time back to first being diagnosed. Seeing specialists, running test after test…only this time around it’s to see how much damage I’ve done since the last round of appointments and testing. Time to discontinue some meds, add others, be poked, prodded, shocked, stuck in claustrophobic tubes, and flipped around on medieval torture tables all while crossing fingers and toes (and hoping I can uncross them after) that brain surgeries aren’t brought up again. Call me vain, but aside from the obviously fears of my skull being opened up, I’m not ready to be GI Jane again.

It’s easy, though, to start falling into the invisible illness trap, and that’s how we ended up booking all these appointments. When you’re oh-so-kindly cursed with chronic conditions that don’t show obviously to others you learn how frustrating it can be to vent. A simple “I just don’t feel good today, I’m so tired” which ENTIRELY minimizes the lead weight of fatigue you’re actually feeling is met with “We’re all tired, deal with it.” you eventually learn to just bite your tongue (and if you’re taking meds that cause epic neuropathy especially to the face, chances are you will -actually- bite your tongue at least a couple times unintentionally!).

I’m thankful for my primary care doc. She has been with me for 12 years. She was the one that finally got me in to the right people for diagnostics after 3 years of being told I was a crazy teenager making things up for attention (Yes, I CHOSE to miss the very last semester of my senior year in order to deal with blackouts and spinal taps and have to go back for an extra semester when I was able. Just what every teen dreams of!). She has been in my corner and understands my strange ranty speeches explaining my symptoms (apparently “burny fire ant bitey feeling” and “you know how blacksmiths bang shit on an anvil and you can feel it all the way to your core on the reverb?” are not standard medical descriptions. WHO KNEW?!) After trying in vain for the past 8 months to ignore growing mobility concerns and a major pain increase, she finally booked me a double appointment and we used it to make all the necessary referrals and work through my brain fog to make sure everything was covered.

My illness isn’t really invisible; on my worst days I rely on a walker with a seat, for a little over a year, at a specialists recommendation, I have been researching the ins and outs of service dogs, and those that know me can see it on my face and in my eyes when I’m at my breaking point. It’s been 15 years and I’m just learning how to ask for help. I’m just now realizing that I’m -not- invisible.

I’m still not sure how I feel about that.

Glitz and Glamour in a Hospital Gown

One of the most frustrating things for me about chronic conditions is dealing with the inevitable occasional (or not so occasional) ER visit.

Explaining that; No, these are not new symptoms. Yes, I do see several specialists regularly. Yes, I do know plenty about my condition and it’s several atypical manifestations that haven’t read the textbook that says they shouldn’t be happening.
I am the prime age and demographic to be seen in the Emergency Dept as a drug seeking frequent flier. How do I know? We have the EXACT same argument every time I eventually get to the point that my normal ten ton ration of daily meds is only the maintainer and I need to break the cycle of pain and misery. A reset button, if you will.

This week I actually had a pleasant experience that was exactly what I needed after dreading even admitting defeat and allowing myself to be dragged, kicking and whining the whole way, to get help. Maybe it was that I was in so much pain that I couldn’t help lashing out when it was asked the seventh or eighth time what the ER normally does for me. Maybe is was just a kick ass PA on for that shift (total shout out to the real-life McDreamy working a 12 hour 3rd shift!) who was courteous, listened, and took the time to listen and acknowledge that, hey, whadayaknow…I know a thing or two about my conditions and am fairly freaking intelligent even when I look like I’m having a stroke and slurring and stuttering on the simplest of words.

Sometimes that’s all it takes. A med reset, and a mind reset. I’m thankful for both this week.

This is why we can’t have nice things…

It’s safe to say I’m a little more than a little… Jaded? Cynical? Bitter? Downright pissed? This isn’t the first time I’m turning toward writing to spill my guts all over a blank page to hopefully alleviate some of the nasty that has taken up residence in my mind.

Anyone that deals with chronic pain and illness can relate, I’m sure. Sometimes it’s all just too much. Trying desperately to maintain some semblance of a “normal” functional life when in fact our bodies are kicking and screaming the whole way and you know that you are undoubtedly going to pay for your attempt for days afterward.

Sometimes I’m far too wordy. Other times not so much so. Given some of the issues I deal with, the rambling can be a bit much, and my language is deplorable… If you understand where I’m coming from, though….

I think we’ll get along just fine.