Archive for the ‘Ehlers Danlos’ Category

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Would love to credit this drawing – but it was a repost in a FB forum – would live to find out the brilliant would that drew this to give proper credit….if anyone knows, please let me know.

Why and I returning to my blog??? Stay tuned for these posts that will explain…

I had a huge disaster over the last few weeks that has totally given a new definition and meaning to the title of my my blog, “MisdiagnosedMe.”
I have had to file complaints about violations of my patient rights (hello New England Baptist Hospital, UMASS Memorial…)….some pretty crappy things have happened to me and I can no longer just roll over, whine a bit about it on Facebook and try to forget it.. Misinformation purposely placed in a medical record is a serious violation of patient rights and can effect the health of the patient – and this info gets transferred fast throughout the health care systems…mine went to 5 different organizations in 4 days! Think of the damage that caould cause. Think of the damage it DID cause…we can no longer keep quiet about these things. Time to stop whining in forums and take real action.
Doctors are writing parody songs about people that are on pain meds for chronic illnesses – they have officially reached the bottom of the barrel of disparaging patients. This has to be shared. How is this OK?
I had a considerable amount of time after a recent serious surgery that let me examine the forum-universe of many chronic illnesses. They are all alike. All claim symptoms belong to them and their zebra illness – how is this possible when all these symptoms are part of X, or is it Z, or is it Q? I have done a brief sociological analysis of this and may have a answer or two.
I want to explore the connections between symptoms of EDS – symptoms that overlap with dysautonomia, autoimmune disorders, skin disorders, etc. etc. I would like to discern if ther is a connection – perhaps we all have just ONE zebra illness, not 4. I am hoping that my analysis (don’t with the help of anonymous survey programs) may Help illuminate this? Maybe even get someone’s attention?
And, most of all I want to hone my writing skills and make use of my experience and education, so perhaps someone out there with some “brand recognition” will notice me and recognize what I have to offer the chronic illness community. Its seems as if the harder and faster I dance, the less I am am noticed and/or heard.
Dammit. This time, I am going to be heard. Even if I have to write my own parody song about doctors that enjoy disparaging their patients, nurses that mock and then abandon their patients as they are stuck on a commode hours after a a major surgery, and hospitalists a that make up new diagnoses to include on your chart, disrespect all prior doctors’ and diagnoses and then make jokes about it right outside the door of the patients room. I promise it will be catchy.

Comments?

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.”