“I am not a snowflake. I am not a sweet infantilising symbol of the fragility of life. I am a strong, fierce, flawed adult woman. I plan to remain that way in life, and in death.” -Stella Young

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There seems to be a current trend in my life that involves spending much of my day stumbling around like a newborn giraffe trying to figure out how to walk. It’s not new. I’ve slowly been acknowledging that it’s there for near on 4 years now, but it’s finally gotten to the point that other people have taken notice of it being more than Bambi style clumsiness and using the rollator regularly isn’t something I can keep snubbing my nose at (all 30 year olds should rock a walker, right? No? Just me? Well, damn…) even though I’d really like to.

It’s taken a long time, and if I’m balls to the wall honest here…it’s still a work in progress, to come to terms with letting my body reign over my brain.

I know, it seems backwards, doesn’t it? All those “Hang in there” kitten posters tell you it’s all attitude…I’m willing to bet whoever tossed that crap together wasn’t dealing with their skull trying to birth their brain on a regular basis, or the sensation of an electrical fire throughout random expanses of body, tingling and searing with white hot pain at the same time, because I can be downright fucking chipper between episodes and it’s not going to make that sensation any more pleasant! Mind over SOME matter, maybe….sometimes….and plenty of expletives for the times in between.

Have you ever had one of those days that is just so inexplicably long and arduous that you are reduced to communicating in grunts, sighs, and eye rolls? Or found yourself staring into a vacuous void in the bathroom mirror at 3am trying to wrap your mind around just how you got to be here surrounded by tiny orange towers of prescriptions and black rimmed eyes that put raccoons to shame. Too exhausted to properly function, and too everything else to just finally give in to sleep. Those are the days the kitten poster pops into my head. It’s always at the most awkward time. Splayed on the floor between the bedroom and the bathroom trying to figure out just how you fell since your whole self feels fairly battered anyhow and you’re not sure how to assess new damage, and despite the tears of frustration you’re maniacally laughing at that damned cat in the damned tree thinking “I totally know how you feel, dude! I finally get it!”

Learning to function and accept the inevitable dysfunction at internal DEFCON 1 is probably the most difficult task I’ve taken on in my life, and I can’t even begin to put to words how what or why it’s so important to me to try to find that miniscule vein of clarity that will just let me simply exist when I need to, rather than participate. There just aren’t a conglomeration of letters I can throw together in the vocabulary alphabet soup of my mind to adequately cover the thousands of facets inability has chiseled into my psyche, but in another strange way….I’m okay with that.

When I have those rare moments to step outside the box and reassess myself, I still see the flaws and imperfections. I see all that my illnesses have taken from me and pushed out of my life, but I can also see the path winding its way through the wreckage. I haven’t stopped. I just keep going. The success rate for making it through my “worst day ever” is 100% so far, and damn it, that’s something! Sometimes my brain needs that little reminder and to be flipped the bird for thinking we’re weak, or useless, or stupid, or whatever other insult it chooses to hurl at itself when things aren’t going according to plan.

Plans are for building a house. I’m building a life….One newborn giraffe step at a time.

“Your reality, sir, is lies and balderdash and I’m delighted to say that I have no grasp of it whatsoever.” -Baron Munchausen

Why would anyone in their right mind assign themselves diagnoses that so many of us desperately wish we could erase from our medical files forever?

Struggling for an adequate and logical response? Yeah, so are the rest of us.

There’s no clear cut reason for why people feign illness. For some it’s a quick paycheck, knowing wallets and purses open readily to those in dire circumstances. For others it’s deeper rooted, feeding a need for attention they may not even realize they have. For those people their lies make up their own twisted reality. They truly believe that they are going through these horrific ordeals and relish the well wishes and companionship garnered from their pseudo-medical journey.

Why choose to write about this, of all things, this week? Like most topics, because it’s weighing heavily on my heart.

Factitious disorder – more commonly known as Munchausen syndrome – is hard to gain any real understanding for. The knee jerk reaction of most people is to brush it off as a poor choice, calling it a despicable action, and ostracizing the individual. I won’t lie, my knee jerk reaction is to want to pummel the specific person that inspired this blog post. To make them feel even one tiny fraction of what myself and others go through even on our GOOD days… To think someone would go out of their way researching and imitating symptoms for the coddling begotten over the internet for how hard their life must be? It is absolutely mind blowing and makes me physically nauseous.

I’ve spent 15 years fighting to hide these issues and be “normal”.
-Obviously I have my own brand of normal.
I’ve spent 15 years fighting to be taken seriously.
-I still have to with every new specialist I see.
I’ve spent 15 years fighting to be understood by my own family.
-They still don’t get it.
I’ve spent 15 years fighting symptoms from meds used to treat symptoms.
-Some of which have totally destroyed my quality of life.
I’ve spent 15 years fighting to find other people like me that could understand.
-Which I have and am infinitely thankful for.
I’ve spent 15 years fighting to raise awareness for rare diseases.
-People still don’t give a crap. It just isn’t important to them.
I’ve spent 15 years fighting to keep what few friends I had.
…And then one pulls something like this.

To have someone so casually shit all over 15 years of fighting is offensive to say the least.

If it hadn’t been a friend, someone I’d confided in on my worst days, vented to, trusted, and allowed past my fortress style barrier erected to keep most everyone out…if it hadn’t been them, then maybe it wouldn’t seem like such an affront. It started off unrelated to my own issues. Googling vague symptoms, complaining of a mystery illness that at first didn’t affect them, but another member of the family. As time wore on, and doctor’s addressed all those concerns leaving them unsatisfied with normal results, the attempts at more rare diagnostics and claims of off the wall symptoms increased. A doctor finally reported this person with the belief that they were suffering from a factitious disorder and needed to seek more than medical help.

Fast forward a year, and suddenly the strange symptoms all belong to the individual. Conversations had in the past about my bad days are being repeated to me, nearly verbatim. Suspicious, but figuring it’s coincidence, it’s brushed under a rug. It went on for months before I cut ties. Now, 10 months later, I come to find that this individual is sharing bits and pieces of a medical journey that is not their own and claiming an emergency room diagnosis.

I’m pretty vague in this blog. I don’t come out and tell you all my issues, and really I don’t intend to. The purpose of the blog isn’t for me to say “I have all these letters of the alphabet, like pokemon, and the list just keeps going!” It’s simply a place for me to be able to express myself (ie: my current frustrations). I can tell you, however, that the diagnosis in question is not made in an emergency room. Like I mentioned a few weeks ago, I spend a lot of time in emergency rooms educating the staff who haven’t the first clue what it even IS, so to have it said that it was diagnosed -without invasive testing (which is one of the few ways TO diagnose)- and without a neurologist is remarkably unbelievable.

I suppose anything is possible in the grand scheme of things, but given the individual’s history? I’d sooner believe in the existence of unicorns.

“But why do you even care? Just let it go!”
I know. Believe me, I know, and I wish I weren’t so invested in it that it didn’t hurt my feelings. I wish that I just didn’t care about this person and could brush it off as if they were entirely insane, but the truth of the matter is that I can’t. I may cut off friendships that are unhealthy to preserve myself but one of my worst flaws is the fact that I continue to give a shit long after I should have burnt the hell out of those bridges, salted the ashes, and reburned them.

I keep holding out hope that someday, somehow, this person will find some modicum of peace in their own mind, as it’s obviously not that way for them right now. I hope that their family thrives beyond the anxious circles they pace while dealing with all of it. I hope for their joy and happiness….but I’m still hurt, and I’m still angry, and I need time to be.

Why do people feign illness? Sometimes the addiction to illness trumps the needs for mental health. What can you do if you know someone suffering in this way? Tell someone. It’s difficult, increasingly so as the internet gives a stage for this type of thing, but reach out to close family for help…or if it is family to your own doctor to find out what you can do in situations like this.

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.

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.