Posts Tagged ‘belief’

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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Great assignment for today  – list 5 most difficult parts of your health focus, and another top 5 list for the little, good things (small victories) that keep you going.

So much has happened in my life the past month – this is a fun one for me:

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THE DIFFICULTIES:

1.  Finding a Pain Management Clinic that has doctors that are up to date on the best new treatments for chronic pain issued (RARELY do I find a pain management doctor that knows more about the latest and greatest than I do – because I suffer from chronic pain, I have a personal investment in my research. I get sick to my stomach when I go to see a new doctor, and I start to talk to him about the surgery I had in 2011, and s/he has NEVER even heard of the procedure – which has been around over 20 YEARS. SCARY. Do I want this person treating me with archaic knowledge. No.

2. Being reliant on medications that I must rely upon to get through the day, every day. Even though the percentages of people in developed countries in the world on daily meds are quite high (over 50%), it seems that people like to pretend they live in ivory towers and are better than everyone else and look down upon people that take medications – no matter what they are.These people tend to be in control of the lives of others: bosses, managers, etc. That makes it hard for people like me to get back to work – when we need accommodations to get to doc appts, or we need to adjust our hours due to our conditions. The ADA is there, but it is really not as helpful as it is made out to be. That will be the subject of another post. Just because we take a medication or we have a health issue does not make us less valuable as an employee or person.

3. Getting people to read my blog. During this challenge – I expected a huge response from my 150+ Facebook and Linked-In and Twitter friends. I have heard from THREE. Yup, 3. What do I have to do to get people to read my stuff and wake people up to the reality of poor health care by our PCPs, and even our experts? An article in the latest issue of Newsweek (April 23-30, 2012 issue) could have been written by ME – it opened with the story of a 38-yr old man whose PCP ignored his constant complaints of symptoms. The man researched his own condition on the internet and learned he had kidney cancer. He was dead 3 months later. (I will be writing a review of this article in a later blog.) How can I get this message out – things MUST change! Billboards? Planes with banners? The Goodyear Blimp?

4. Finding friends that are tolerant of my tenuous scheduling issues. Due to my multiple conditions, I do not know from one day to the next how I will feel, if I will be able to drive, if I will even be able to focus properly. Usually I can come around in 2-4 hours after I wake up – but that required people with flexibility. I have ONE friend right now that “gets” me and is still my friend. The rest, sad to say, have all drifted away, and some have posted snide comments on my FB pages about my issues “What now?” “Gross.” Some just don’t post anymore -even family. They are on FB  – I see them on chat – I see them comment on other’s posts – but all of mine are ignored. It hurts. And then, my doc gets after me for not being socially involved. Gee – how can I be when no one has the patience – or cares enough – to be my friend.

5. Not being a “productive member of society” when I used to work 60 hours/week, go to the gym 5 days/week, personal-train a few folks on the side every week (I was a personal trainer in weightlifting for many years) and have a social life on top of that. Now, A good day for me is getting up, emptying the dishwasher OR taking out the garbage OR doing laundry. I feel very useless. I feel like an “in-valid” on Gattaca.

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THE THINGS THAT KEEP ME GOING (that keep me from giving up):

1. My husband, Kurt, and his belief that I do have value, even in my current state.

2. Sharing my life with my parrots, watching with awe as they communicate with me and Kurt, as their personalities develop, knowing they will be with me for the rest of my life. I am so thankful to the Universe, to Spirit, to God, for giving me the opportunity to share my life with such amazingly intricate and specialized sentient beings.

3. Finding my new counselor, energy psychologist Fern Ross Israel, who has helped me more in the short time I have been seeing her, than ALL of the counselors I have seen since I was 16 yrs old. IT was serindipitous how I found her – so I knew she was the right person for me to see. The Universe has truly gifted you, Fern.

4. Ben & Jerry’s Limited Edition flavor available at Target ONLY – Brownie Chew Gooder. Hands-down, the most PERFECT ice cream flavor ever to come in one carton. Even when I don’t feel well  – it is the only thing that I can eat.  God Bless you, Ben & Jerry!

5. Polymer Clay. This versatile medium has enabled me to express myself in a variety of ways. Too bad the psycho-mommies of the world think that everything was created for their kids – and they forced the companies to change the formula. This WAS a serious art material, not a kids toy. There were kid’s clays already. Now, I have to spend 5x what I would have had to spend 3 years ago to get a quality art product. Bitter am I at these mommies – yes. But, I have stockpiled enough product via free Amazon certificates I earn through the completion surveys online. And this makes me blissful.

What superpower would I choose that could not only assist me in my endeavor to enhance the medical treatment of people with out-of-the-ordinary medical issues, but a quality that would help me in circumstances that challenged me my entire life. I simply want my words to be believed.

For some unexplained reason, people have always questioned the truth of my words. To illustrate the extraordinary power of chronic disbelief, i offer some highlights:

At age 3, the 9-year-old girl that lived across the street from us would repetitively hurt me, with sticks, in my private areas. The words I owned at that age were not enough to convince my mom and grandma what was happening. So, I was told not to make things up about others – that it was “not nice to lie.”

As I was explaining to a couple of my mom’s friends how my cat knew how to unlatch our screen door and let himself out, they laughingly told my Mom, as if the little 8-year-old girl wasn’t standing right there in front of them, that I had an “overly active imagination” (adult code word for LIAR).

Shortly after I started attending my third school during my 5th grade year, I was forced to remain in a 3d grade classroom for half of a morning, and called a “liar” in front of the class as I sobbed, scared I was going to get in trouble for not being in my proper class. I tried repeatedly to explain I was really in the 5th grade. An office secretary found me when my 5 the grade teacher wondered where I had disappeared to after recess. Vindication!)

Then there are the numerous times I tried to explain to trusted elementary school teachers and aides that something terrible was happening to me and my Mom at home (just physical and sexual abuse, lots of gin-drinking, and that I was frightened to go home each afternoon…) only to be told that I should stop reading too many books.

When I graduated from high school at 16 and immediately started college, on one occasion I had to bring my mother into one of my college classes because the prof didn’t believe I should be in her class.

The trend of disbelief continued as I got older: I was consistently questioned about things that happened in certain situations at jobs, (which usually ended with me being blamed for something I never said or did); Medical professionals stared at me with raised eyebrows as I detailed the severe pain and prolonged bleeding during periods, or the unilateral swelling in certain joints, the mysterious rashes and fevers I cyclically experienced, the exquisitely painful swelling of one of my breasts that lasted six months…

Being doubted helped me to develop excellent research and investigation skills, taught me the importance of documentary evidence and the proper methods of gathering it, and forced me to hone my observational skills. However, living like this on a day-to-day basis is exhausting: I ALWAYS had to be tuned-in to the subtleties others’ actions, to consistently perform risk/reward assessments over the simplest of interactions, and literally toting around copious amounts of papers containing research – “evidence” of what what and is real and true.

What would I do with this superpower of “being believed?”

I would bring my believability to those that have the power to make and change health care policy, and to those that would be able to deliver my truths to greater numbers of people, worldwide. And because what I had to say was and is true, the quality of people’s lives would change. No longer would someone have to wait until their mysterious disease was end-stage, as the appropriate interventions would be made when their symptoms first revealed themselves.

Most of all, albeit selfish in the eyes of some, I would hope to meet the superhero with the ability to turn back time so that when I first brought evidence of my autoimmune disorder to the attention of my doctors, I was properly treated. Paramount, when I first related my bizarre, burning and deeply painful symptoms in my right buttock and hip to a orthopedic doctor, diagnostics beyond an x-ray would have revealed the genetic anomalies in my anatomy, and I would not have undergone 5 more surgeries than were necessary, and suffered the losses of careers, relationships and 15 years of life and serenity.

First, do no harm. Believe the patients.

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