Posts Tagged ‘medical conditions’

InvisDisability

My current medical symptoms would send the average person to the ER…crushing chest pain, blurred vision, difficult breathing, unrelenting migraine headaches, inability to eat normally, tachycardia or bradycardia, high or low blood pressures, insomnia – oh, and the back pain I can’t find any specialist to address because I have already had 6 surgeries, and now, the shoulder that already has been repaired twice is painfully shredding its way out of its socket…I really haven’t had a “good day” in about 12 years. But I don’t LOOK like I’m sick so people think I am a malingerer, just looking for attention, or faking my symptoms.

I guarantee I haven’t developed the magical ability to manipulate my blood tests, MRIs and various other medical tests so they come back abnormal.

I have had a difficult time learning to accept my medical issues. I have many symptoms in many systems that cannot be classified into any particular category. I have most recently been dumped into the category Ehlers-Danlos Syndrome (but not any particular type, of course) as this seems to at least catch-all the symptoms I display in some way. All of my official diagnoses have the letters “NOS” after them – “not otherwise specified.”

It really stings when people are just plain callous about my health issues – and it is the worst when these people are the doctors that are supposed to help me. I have had to had to do a lot of my own research within professional resources (Medscape, PubMed, etc.) and advocate strongly for myself. This has meant seeing many doctors in an attempt to find one willing to take on my complex issues and try to piece together the puzzle that I am. I have been treated quite harshly by many health professionals due to my complexity. I understand that they may to want to take on a patient they cannot easily figure out. It would just be nice if they could not be so abrasive in their dismissal of my symptoms and test results.

Because of the unpredictable nature of my symptoms, I have lost what few social connections I had. I spend much of my time alone, at home. I used to find solace in online forums, but I have found many of these are similar to real-life support groups that tend towards a circular discussion of hardships – and never achieve any growth or change. What would be helpful is a directed, online resource or app that provides guidance and education in the management of chronic illnesses and the psychological challenges people like me experience. Can such a thing become a reality?

I have always had to be a survivor – my Type A personality and perfectionist tendencies helped me through the cPTSD (complex PTSD) from 14 years of sexual abuse, rapes, and general cruelty from classmates. I found ways to cope – all on my own. I never really had much of a support system. Now, to be sidelined from so many activities that used to define “me,” was – and IS – quite distorting to my thoughts and feelings about life in general.

Anxiety has replaced what used to be stoic resolve.

Anger and resentment that I was formerly able to tap into as energy to push through rough situations – to make myself physically stronger in the gym, or mentally tougher in the workplace – now comes to the surface in staccato bursts, and those closest to me (my husband, primarily) suffer the consequences.

It took me about 6 yrs to be able to say the words “I can’t.” This is NOT pessimism. It is pure, unadulterated realism. And with the myriad of undiagnosable conditions I live with, I HAVE TO be realistic. To think any other way is deleterious.

I know this goes against the “rainbows, unicorns and fluffy bunnies” mentality that most self-help resources (and professionals) seem to think is THE ONLY WAY is the way to overcome hard times. But, with the help of a therapist that specializes in treating people with multiple medical issues, and, a good PCP that is a realist, I learned that I HAVE TO say the words, “I can’t.” It’s really a no-brainer – but 99% of people just don’t have the comprehension of how their body actually works to really understand. Simply, it protects me – and others – from injury. An example of this would be not getting behind the wheel of my car when I am having certain symptoms.

Don’t misunderstand me, it doesn’t ever feel comfortable to say “I can’t” – and many people don’t “get” this way of thinking at all, nor do they even bother trying. This leaves me feeling isolated and rejected by society. I might as well be some alien life form. And, if I had a dime for every time I have ben offered advice about supplements, yoga, qi gong, tai chi, Reiki, acupuncture and whatever new “complimentary therapy that Dr. Oz has been touting of late, I’d be one a rich gal.

People need to learn that not all disabilities are visible ones. Not all of us that have difficulty getting about are in wheelchairs. And, not everyone with life-altering conditions look or acts “sick.”

The sun going down on me. Photo by Lori Schneider.

The sun going down on me… Photo by Lori Schneider.

 

 

 

 

 

 

 

 

 

 

 

 

 

The myriad of health issues I have are now battling for center stage with my failing relationship with my only real-life friend, my husband. OR it is most definitely contributing directly to it.

[But that is another topic in and of itself  – one that doesn’t belong in this blog. It just would be REALLY great of my husband, and alleged best friend would understand these things, and want to work on our relationship. But his lackluster responses to my pleas for us to work on this don’t give me much hope, nor reason to be. At times he acts as if nothing is wrong – yet I know deep down that he knows what our relationship has become, aided by my mysterious health issues and consistent issues finding medical care, is not much more than coexistence. BUT – what do you do when your partner in life doesn’t make the effort to try to improve your relationship? Ouch.]

These health issues stole my career paths and any options I had within my fields of expertise. I tried for years to do something from home – to use my  skills and experience to help others – for free.. But, no one wanted my help  – this devalued what I had made of myself, who I was, what I had accomplished, and what I thought I could do that would be meaningful.

Every day, I never know what symptom or issues will pay me a visit and hang out to make me question the validity of my existence.

Ahhh, and how these things – I mean things that used to annoy me, or cause me psychic discomfort – have changed me. I have lost myself. My raison d’être, my sunshine, is disappearing. The sun is going down – on my life.

For 40 years, things that got in my way were motivating to me. They made me fight, they made me strong,

Now, these things paralyze me.

Literally.

I often will just plop down on the floor where ever I am when these feelings hit me, and just stare at a fixed point.  (It is a grounding technique – in more than one way. Ha Ha.)

No longer can I throw myself into a project, a creative endeavor, a research topic. I find that these distraction techniques/coping mechanisms just increase my physical symptoms. And of course, these involuntary reactions just increase my doubts about my ability to survive this predicament.

What I need now is the me from 5 years ago – before I lost my self to this hell. But alas, she is gone. Yup – thrown in the thrash, compacted and burned. A deep “thanks” to all of you – you know who your are – all of you so-called patient advocacy groups that made promises that I could write for your website/journal, all of those false friends that hurled criticisms at me, and all of you “health care providers” that violated that basics of that all important Hippocratic Oath by failing to treat me as a human being – you all helped do this to me.

One person can only fight for so long – alone – before all these things take their toll.

“He who has a why can hear with almost any how.”
so goes the famous Nietzsche quote.

I have lost my WHY.

And that makes it hard to find that HOW.

Day29

 

 

So It’s Day 29.  One more day to this blog challenge. To date, this year’s HAWMC has been one of my most successful blogging endeavors. I look forward to more blogging , but I only hope WEGO changes a lot of the prompts. I dislike being repetitive.

OK  – so none of those things I mentioned above count as my “three things” – the things I “love” abut myself, things I am great at doing, or things I just want to share. I’ve already done a lot of this stuff in this blog challenge, and if y’all haven’t picked up on any of it, don’t expect me to to go back and highlight them for you. Why?

Thing #1: I live in total FEAR of being considered “conceited.”  This dates back to 7th grade, when being conceited was a virtual death sentence and insured that you would get beat-up at lunch time on a regular basis by the gangs (yes – middle school GANGS in the 70’s), thus guaranteeing me a spot in the principal’s office each day at lunch time do that the school officials would know I could eat my meal without the fear of being pummeled. The fact that I looked about 2 years younger than I actually was didn’t help the fact. Nor, was it helpful that I was in the “gifted and talented” program – back when “gifted and talented” meant that you had some sort of academic prowess without trying –  and not that you were a regular on the short yellow bus,  as “gifted and talented” seems to refer to these days. So, when someone infers that I “think I am better than others” – It REALLY raises my hackles (even though I have yet to identify where the “hackles” actually reside). I don’t, in the least bit, think or assume that I am “better” than anyone – I just know that I have decades of experience doing research of all kinds, and that I have a decent grip on data management. Which leads into …

Thing #2:  How did I develop my research skills? Every single job, employment, or career I have had in the past 35 years has involved some sort of research and/or investigation. I met an attorney while I was working as a bartender at a racquet club (yes, a little weird) – and he thought my meticulousness as a bartender would make me a great paralegal (how he arrived at that decision baffles me, but he was right!).  He taught me the basics in about a week, and then relied solely on me to do his legal research while he was up in the courtroom defending his clients while Court was in session.  It was my job to run up to the Courtroom in the nick of time, much like on “Law and Order,” and deliver to him the case law that would ensure a win for his argument.

About 6 months later, I was faced with my first medical research project – a coworker was diagnosed with “pre-cervical cancer ‘ (what is now known as HPV). The doctor didn’t think much of it, and didn’t treat her – at all. In 6 months, the “pre” cancer had metastasized throughout her lower intestines and reproductive organs, necessitating surgery that left her sterile (sans lady parts) and without most of her large intestine – at age 26. Coincidentially, we had the same doctor, and three months after her diagnosis, a letter informing me that I had an abnormal Pap test arrived in the mail. (These days, you get a phone call urging you to haul yourself into the office ASAP and get that stuff taken care of). I quickly began to research  – the old-fashioned way – Al Gore had not yet invented the Internet, or if he did, DARPA had not yet  publicized its existence. I learned about cutting-edge (no pun intended) treatment for HPV, and that immediacy of removal of any lesions was considered “standard of care.” I was lucky enough to gather enough evidence on this, and present it to my insurance company, with the hope that they would urge some physician to address my situation. I was summarily ignored by the insurance company (what a surprise – not) –  so I contacted my senator’s office to bring him up to date on the matter. Thanks to him, I was granted the ability to receive the “new” treatment (laser surgery). The research I had gathered was successfully used to secure a judgment in favor of my co-worker against our lazy doctor that thought it best to just ignore HPV since only women of “low morals” got the disease (gee, thanks for the flattering character judgment, Doc).

I knew I had stumbled into something that was going to be a big part of my life – medical advocacy – but I had NO IDEA that the time and energy I would be spending in this new field would be mostly for my own, increasingly bizarre medical conditions: an exceptionally large ovarian cyst (a “dermoid” that was also fluid filled); autoimmune hepatitis; Raynaud’s  – which almost put a stop to my (short) powerlifting career; a strange constellation of symptoms that ended up being diagnosed as an autoimmune disorder similar to lupus; a rare reaction to an SSRI; back pain that was not originating from a spinal nerve as every doctor I saw thought, but from a genetic variant in a muscle and my sciatic nerve that had developed a mass of congealed nerves around it, causing extreme pain, radiculopathy and bladder dysfunction (for which I underwent FIVE unnecessary back surgeries); delayed sleep phase disorder that originated from the trauma I experienced as a toddler (finally proving that I’m not lazy – just extraordinarily vigilant); painful growth of accessory breast tissue in my armpits bilaterally that I was told was “just swollen lymph nodes,” sudden, extremely painful increase in breast size (5 sizes!) at age 46 that no doctor would address – which lead to the discovery of a cyst in my breast and a pituitary tumor; a hormonal response to pain medications that had never been acknowledged in females – only males – until recently…and now, my largest challenge to date – an autonomic nervous system disorder that doesn’t fit into any of the more common manifestations of these relatively rare conditions.

Thing #3: I am very skilled at researching. I take pride in the fact I try my hardest not to fall victim to “confirmation bias” as many researchers tend to do. I ferret out the best jumping-off points for my research, and rarely come up for air until I have the answer I originally set out to find. I break down my goals so that I am not looking for the “cure for cancer” at the outset. I would like to use my skills to help others, and blogging is my first step in reaching this goal. 

Bonus Thing: I am a decent photographer. I revel in capturing details that 99% of people seem to overlook, walk past, step on or throw away. (I REALLY dislike the fact people enjoy kicking mushrooms) – they are ruining a thing of delicate beauty and destroying an entire ecosystem with their selfish boot.) I would dnot have even become interested in photography, or learned how to “See” the little things, had it not been for several unsuccessful back surgeries (I have a genetic anomaly that has made things quite difficult for me to get any relief at all from my back issues) that forced me to leave my 14 year career as a litigation paralegal (not a secretary…a paralegal…the people that do all the work the attires get the credit for) and return to school to pursue a degree in science. A trip to Costa RIca to study invasive species provided a nice opportunity for OJT training and I was hooked after taking my first SD card of digi shots. I learned NOT to alter my images and rely on my “eye” to capture shots that didn’t need alteration. I like that I can do that. It is one of the only things about myself that I can talk about without feeling conceited – but proud. 

SpiderwithTealPedipalps

Noting is quite so beautiful to me as this picture of the first adorable jumping spider – did you know they had multicolored pedipalps that look like buck teeth?! And isn’t it so awesome that you can see ALL of his button eyes? Neat – huh?

IMG 0364The mushroom pic that started my love affair with photography. The light shining through the cap that showcases the delicate gills underneath are awe-inspiring – at least me to me. 

I had to stop participating in the @WEGOHealth blog challenge. I am having so many problems with my health right now, I literally couldn’t keep up with the daily posts. Kudos to those that can. I can’t think or write while fighting the nausea and chest pains curled up in a little ball like a sick kitten.

I’m so very angry right now with my doctors – not a single one seems to be taking all these crazy symptoms seriously. They just keep referring me to this specialist or that test, without taking into consideration how I’m supposed to live day-to-day with the symptoms I have. It’s as if no one wants to make the diagnostic leap.

Dr. House, where are you?? I really need you. NOW.