Posts Tagged ‘disability’

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.”

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I am soooo thrilled to see this posted – so I am reblogging it here from Lindsay’s blog – Thank you Molly Clarke from Social Security Disability Help!

The original post is here….
http://dysautonomiac.com/2013/05/05/applying-for-social-security-disability-benefits-with-dysautonomia/

I DO have questions as I know the certain people with ANS disorders (remember folks, “dysautonomia” is NOT a term used commonly in the US to describe the 25+ conditions that fall under the umbrella of what ANS disorders) that gave had a relatively easy time getting approved as they
1) did not call their problems, ‘ “dysautonomias.”‘
2) As Ms Clarke suggested, these people listed EACH malady that the ANS disorder gifts us with (for example: delayed gastric motility; orthostatic hypotension; reduced blood volume, visual disturbances, labile BPs, etc. and provided documentation from their team of docs to back up their claims in a cogent manner.
3) Used careful consideration about using “POTS” as a disabling DX, since MANY POTsies post all over social media about their team sports in school, their 5k runs, etc….POTS is officially listed in places like the Merck Manual as a “self-limiting condition” and other sources – (I think Medline is one, and there are at least 2-3 more medical apps that are used by docs to gather details a out these conditions that describe POTS as something that “resolves” after the initiating event that causes it (pregnancy, growth sports, surgery, etc.) Yikes.

(As an aside, I recently had a nice email exchange with a real live cardiac doc the said 50% of his POTS patients had either small hearts or another myopathy. THOSE diagnoses are much more powerful and permanent than “POTS..”)

Also – PLEASE be careful about your social media postings, photos, exploits that are documented by others….I worked insurance defense ferreting out bogus claims for years…. Running a 5K, being photographed have a hellacious time at a baseball game with beer and friends, or showing all your lovely landscaping skills can REALLY cause some raised eyebrows in the reviews of applications…just be judicious and modest.

Thanks again to Lindsey for having this guest blogger describe the basics of applying for disability.
Awesome idea!!!!

I have had DSPS since I was about 2 or three yrs old. Granted, one may surmise that it developed due to the nightly sexual abuse from my biological father. As an incest victim, you develop an odd response to the abuse. I have crystal-clear memories of the events of those nights…and some days…If I was awake, sometimes he would leave me alone. I imagine he had a form of DSPS since he was a classic “night owl” and also had issues with getting to jobs on time – much like I did when I hit the job market. Then, some of my recent research sent me to the human genome, specifically the hPer3 gene (and others), suggesting that there is a genetic cause for this antisocial night owl syndrome. Gee, Dad, I have SO MUCH to be thankful to you for, don’t I? Gag me.

Thanks to this DSPS curse, while I was a kid, I was often “out” of school more often than I was “in” school. But. Thanks to the cursed DSPS, I used to crank out my homework and managed to be a straight A student my entire life, in spite of my “poor attendance.”

Thanks to DSPS, I have had to leave professions I loved (law enforcement, the 7a-7p legal field, biotech), and, I have lost best friends and romantic relationships (because of my “inflexibility, stubborn ways, and always getting sick” to quote an ex-husband).

Society lives under this odd misconception that everyone could be a better person if the just “got up a little earlier!”  Think about the words you hear if you come i a bit late to a meeting, to a class, to a special event.  “You should have got up earlier,” said with the requisite smirky know-it-all I’m-better-than-you-are smile.

Spend a week in my shoes and learn how it just is not possible to “go to bed earlier” so you can “get up earlier.” I have 30+ years experience of taking every kind of sleeping medication on the market (no, not all at once) and not having a SINGLE SLEEPY MOMENT from any of them – or even wore – having a paradoxical reaction to them – getting jazzed, spastic and hyper. It is not a conscious choice, people. In fact, I am REALLY pissed off at YOU, you know who YOU are, YOU, who twisted my arm into trying all the natural sleep remedies that were a monumental WASTE of money (LIGHT THERAPY – REALLY?! What a joke. Put me right back to sleep. In the morning. When I SHOULD be sleeping.). YOU, that insisted that everything would be just fine if I “learned” how to go to bed “on-time.”  ON WHO’S TIME?  And, YOU – who prescribed Ambien, Restoril, Tranxene, Lunesta, Valium, Klonipin, Amitryptiline, Nortryptiline, Trazadone and several muscle relaxants like Flexeril…all to get ME to “become normal.”

Well guess what, YOU?  All of YOU?  I AM normal.

Scientifically documented, peer-reviewed, ICD-9 coded and ISCD defined. And the number ONE way per a person to handle being a DSPS “patient?”  ACCEPTANCE. So, I chose to accept it. For one week, I let myself go to sleep when I was tired, naturally, sans chemicals. I let myself wake up, sans alarms or light boxes.  And guess what!!!! You won’t believe THIS one. I had a GREAT week! I had less chronic pain. I had NO migraines – NO MIGRAINES! (That should be front page news!). I ate normally. I went to yoga cheerfully and came back from class feeling happy!

So, I am now 5 weeks into this ACCEPTANCE phase and loving it – and dare I say, loving myself. Not only have a cleared my body of unnecessary and conflicting chemicals, but I have removed the self-deprecating voice from my head, chastising me for simply being me. I know I AM normal, for me. Whether this was caused by the PTSD from being sexually abused for the first 14 years of my life, or it was because of a genetic anomaly in my hPer3 gene, or other related genes, I am a DSPS sufferer, that is no longer suffering.

By the way, the ADA (effective 2010) recognizes DSPS as a “disability” and requires workplaces to make reasonable accommodations for people with DSPS. In other words, non 9-5 hours. So, when I go back to work, once my chronic neurological issues are under control, I plan to return to work to offer my research skills to the world – while I am at my peak effectiveness, and I can give my employer the most for their money!

 

I found this writing the other evening. I wrote it for a newsletter for a company that supposed to be developing a chronic pain website. I don’t know if they ever posted it.

God bless my wonderful husband, Kurt. He is a-maz-ing.

I called it, “Being pain free, just for a moment.”
My husband wakes me up with a kiss on my forehead to say ‘goodbye’ before he leaves for work. He is smiling and asks me how I am feeling. This is the hardest question for me to answer.
My lower back is stiff and painful. My legs refuse to respond to my subconscious directions to move. My feet ache and my lower legs are swollen just enough to make them ache. The back of my neck and upper thoracic areas are on fire. I smile anyway. My mind goes back to something my husband said in the car a few weekends ago. “You know what would make me happy?” he said. “To hear you say that you feel great – not to hear you list off all of your problems and pain – not to hear you dwell on your problems all the time.” But, I can’t lie, and darn it all, I don’t dwell on my medical problems. The cells in my body do that for me. Thus, I am forced to be consciously aware of my pain all of the time, even with diversion. I briefly think about a worst-case scenario: What if something happens to me later on – he would not be able to advocate for me – “Well, she said she felt fine earlier,” he would tell the doctor/ambulance crew. So, do I lie to make my husband happy before he goes off to work, so he can have a good start to his day, or do I honor my body, and tell the truth?
I decide to change the subject – I roll over as carefully as possible, peel myself out of the bed and go to the bathroom, telling him that I’ll be right back. By the time I return, he forgot that he asked that question, and the conversation moves on to dinner, and what we need at the grocery store. So he leaves, thinking I am fine since I didn’t complain, and proceeds through his day with now idea how I struggle.
My husband comes through the door, always grumbling about the stupid drivers he must dodge in order to safely navigate the twenty-six miles from his workplace. I empathize. I used to commute by car too, before I became a medical train wreck. The question is asked again, “how do you feel?” This time subterfuge is easy. I tell him all the things I did; factoids form the silly TV shows I watched, gossip about friends and neighbors. No mention is made about the searing back and leg pain, the stabbing pain still in my neck, alerting me a migraine is just around the corner, or a series of uncontrollable muscle spasms that rendered me unable to drive. I did enough things around the house to make it look like I was busy and actually accomplished something housewife-y – more than watching TV while laying on heating pads, doing stretches to try and loosen my tight muscles that squeeze the nerves that most likely cause my back and leg pain. Or, that I napped for three hours. Of course, the medications that I took to try and maintain some quality-of-life are not mentioned either. Hubby curls up on the couch with his laptop and cruises the net, completely immersed in reading his techno-geek websites. My condition is no longer a concern, or so I think. Then around 8:00p.m. he announces that he has made me a nice warm bath, to help relax my back and legs. Perhaps I will sleep better, he says. Without my verbalizing about the magnitude of my issues, he knows, at least to some degree, how I really feel. I underestimate his ability to perceive my aches and pains. After my bath, I tell him what he wants to hear. “I feel great! Thanks for thinking of me.” It is still a bit of a white lie, but I do feel great – and loved. For a few moments I am pain free, and I smile, for real this time.