Archive for the ‘social networks’ 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?

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Here we go again – something that links directly to doctor-patient communication, and doctors attitudes about their hard-to-diagnose patients impacts us in ways they never imagine. Perhaps the health community should rethink their approach to patients like us…and maybe then we won’t have the issues that this blog by Michelle of “Living With Bob” discusses.

If you have a chronic, but invisible illness, you may have noticed that there lacks (for most zebras) the rally and support experienced by those with more visible, well-known conditions.

Friends and family members makes passive-aggressive comments about your constant “issues.” Or, they stop including you in their lives, period.

Michelle, wrote an excellent post about this yesterday.
Please read it here

Regular readers of my blog will know this is something I’ve had to endure for several years now.

What baffles me is how ignorant the doctors are…you present with several bizarre, subjective (not objective!!) and tangible conditions, a history of hospitalizations, surgeries….yadda yadda yadda…and STILL they question you, almost implying you are imagining all the problems you have.
The day I can will my blood tests to be abnormal (as they are) is the day I’ll be Queen.

My support comes mostly from strangers I’ve only “met” through the interwebs – others just like me, with exactly the same conditions – or others that are wonderfully empathetic. But no one IRL.

So, what has your experience been?

Have you been abandoned by friend and family?
Do doctors constant question you about “really” being unable to work?

YMMV – I’d still love to hear your about experiences.

Here’s some info- albeit not empirical – a good posting that describes a DYSAUTONOMIC’s experience (not just POTs patients). This was posted on another bloggers blog and I’m re-posting here. ..and, oddly, contains passages that I, (myself..me) had written in response to a posting on someone else’s blog months ago.
So I learned a lesson…always make sure you post your musings on your own blog to preserve ownership.
Regarding this “article” – It describes FAR more than POTS-which, is but a small percentage of those that have the symptoms described in this re-posting and apply to most folks with dysautonomia. (Disagree? I’ll let my dysautonomic specialists know.)
I often ponder why it is that most POTS folks seem to claim ownership of the dysautonomia diagnosis ….it’s as if the rest of us that have another, and often untreatable, form of the disorder just don’t matter at all….
A note to those that fit into this category (the non-POTS group) – you are not fighting this invisible illness alone. Medscape has a fantastic educational page on Autonomic Disorders in their education/diagnostic section. We do exist.

LAST week was National Invisible Chronic Illness Awareness Week!
As is typical with chronic illnesses, I was not able to complete this due to some symptom issues-until now. It IS still the 15th…so I hope I get some credit for getting my post in under the wire!

I found out about this from fellow blogger, Lindsey, of Musings I’d a Dysautonomiac – you can read her post here: http://dysautonomiac.com/2013/09/11/invisible-illness-week-2013/

Invisible Illness Awareness Week also encourages bloggers to complete the “30 Things About My Illness” questions – see my answers to them below.

1. The illness I live with is:

Autonomic Nervous System Dysfunction (which comes with a mega-long cast of not-so-fun individual issues such as intermittent gastroparesis, severe dry eyes; small nerve fiber neuropathy; labile blood pressure/sudden drops or increases in BP, chest pain, tachycardia/palpitations, etc.); Unspecified Connective Tissue Disorder (joint pain and swelling, liver inflammation, vision disturbances, sun sensitivity, livedo reticularis, Reynaud’s Disease); Sacroiliac Joint Dysfuction; Chronic Migraines; Delayed Sleep Phase Disorder/Severe Insomnia

(Sounds like I belong in a nursing home…at 49.)

2. I was diagnosed with it in the year:

I was diagnosed with “autoimmune issues” and “Reynaud’s” in 1987…the rest just kept on coming.
The autonomic disorder surprised me in August 2012 with 3 ER visits and a week long hospital stay which lead to my diagnosis,

3. But I had symptoms since:

I had the migraines since 1975 and the sleep disorder since 1968 though…

4. The biggest adjustment I’ve had to make is:

Finding a reason to just keep going on, day to day. Half of this stuff took away my ability to be dependable enough to continue my career. Then the rest of the illnesses took away my resilience and perseverance,

5. Most people assume:

Probably that I’m lazy or just trying to get sympathy or attention.

6. The hardest things about mornings are:

I never know how I’ll feel – what joints will hurt or be swollen, if my SI will be out of place, or if my BP will be too low or too high – or how my heart will respond when I sit up. I never know when – or if – I’ll get any sleep at night, so my morning may be your afternoon.

7. My favorite medical TV show is:

It WAS “House.” It was one of the most medically accurate, yet the most unrealistic shows in the medical genre. There is no such thing as a doctor that is a “diagnostician” like House. We all just WISH there was! I did learn how to do differential diagnoses charts from the show, which my docs seem to appreciate – they show the connections between all my weird medical issues.

8. A gadget I couldn’t live without is:

My Interferntial Stim Unit (I have 3. My favorite is my Empi IF3 – as it is VERY strong).
I’m also fond of my iPad Mini.

9. The hardest part about nights are:

Wondering whether or not I’ll get to sleep.

10. Each day I take:

Lots of breaks to lay on the floor to get my heart rate to come down, and my BP to stabilize. It also gives my SI and painful joints a break.

11. Regarding alternative treatments I:

Have tried literally just about EVERYTHING out there – including, but not in any way limited to: reiki, chiropractic, all types of massage, acupuncture, Thai yoga, Chinese herbs, more supplements than I care to think about, EMDR, CBT, “voodoo acupuncture” (done by a counselor without my knowing what she was doing) – all a HUGE waste of cash – except for massages, as they do feel good, but aren’t a cure by any means. I honestly believe that most alternative treatments that “work” do so due to the “expectancy effect.”
Sorry folks, but I’m a scientist.

12. If I had to choose between an invisible illness or visible I would choose:

Definitely VISABLE. I am SO SICK AND TIRED of being told, “you look just fine to me.” If I looked sick, maybe I’d get a bit more attention from the medical professionals as well, and people would respect the fact I was sick and let me sit down on the subway so I don’t have to sit on the floor (gross) to keep from passing out when my BP drops.

13. Regarding working and career:

Whats that? My career in the legal field was put to an abrupt end when I wasn’t allowed to recover from my 4th back surgery -it was “come back full-time or leave.” I managed to get my biology degree and worked briefly in biotech until my medications and pain made it impossible for me to maintain any sort of schedule. Now, with the addition of the autonomic disorder – I can’t even work a volunteer job. I’ve tried. All this medical mayhem makes me unreliable – which is NOT a personality trait I had before and is completely attributable to my medical weirdness.

14. People would be surprised to know:

I really don’t want to go on living. It’s just getting worse. I watched my mother decline miserably. I don’t want to get there.

I’m so hurt by the people in the so-called support networks that choose to ignore any facts I present to try and help them learn about their conditions and how to appropriately advocate for themselves…my docs tell me I should use my knowledge to help others, but no one wants my help. It leaves me feeling quite useless.

15. The hardest thing to accept about my new reality has been:

I will never be the person I was on track to being 12 yrs ago.

16. Something I never thought I could do with my illness that I did was:

Went zip-lining in 95 degree heat in the California desert. It was awesomely and very difficult and worth every pain, palpitation and the post-sun welts and migraine.

17. The commercials about my illness:

There aren’t any…unless you count the ones that cover the autoimmune stuff like RA, which my connective tissue disorder fall under). They are so unrealistic. If you take those type of meds (“bio logics”) that they advertise, you CANNOT do the things they show the people doing. You can’t get bruised, bitten by bugs, or travel to places that don’t have health standards equivalent to the US. A good friend of mine died because he was on one of those meds – for “moderate RA” (an autoimmune disorder) – had a minor accident that resulted in an internal bruise – missed by the docs – infection developed – and he died 24 hrs later. So the commercials for the autoimmune illnesses are… INACCURATE.

18. Something I really miss doing since I was diagnosed is:

Having a purpose. (See. 14, above)

19. It was really hard to have to give up:

Working out with weights.

20. A new hobby I have taken up since my diagnosis is:

Napping.

21. If I could have one day of feeling normal again I would:

Find someone to go country dancing with – not line-dancing – but two-stepping, swing dancing – the couples stuff. After a good long workout in a hardcore gym. Then eat a HUGE steak and lobster meal. And have an alcoholic beverage or two, preferably with little umbrellas.

22. My illness has taught me:

To be grateful for the tiny things I can complete that most people do without thinking.

23. Want to know a secret? One thing people say that gets under my skin is:

When people say I must be OK if I’m out driving or going places.
When people say in a snarky way, “I wish I could lay around all day.”

(I stole this next part from Lindsey-because it’s EXACTLY how I feel): Really? Because I wish I could go to an office everyday and make a difference. Remember, it’s not like we stay home when it’s time to work, but we’re out partying and having fun the rest of the time.

24. But I love it when people:

Are nice to me and understanding. Which is VERY rare here in MA.

25. My favorite motto, scripture, quote that gets me through tough times is:

“He who has a why to live can bear with a kist any how.” – Nietzsche

26. When someone is diagnosed I’d like to tell them:

Get ready to be your own best advocate. You are in for a battle with almost every medical professional you will meet. Good luck finding doctors to help you – but be willing to take advice from people like me that know how to navigate the system, know how to find the good docs, and know how to research the issues. (I really get upset when people on social boards plead for help, then don’t respond when I offer to help them. I guess they just want to whine.

27. Something that has surprised me about living with an illness is:

No one wants to be friends with a sick person. Period.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My husband lets me nap whenever. He understands “sleep debt.”

29. I’m involved with Invisible Illness Week because:

I want people with chronic illnesses to start being proactive about taking control of their healthcare and the course of their illnesses.

My negative experiences with the so-called support networks haven’t been at all positive – if anything they support the continuous whining and complaining – which is quite UNhealthy. Some of the boards sound like a game if “can you top this?” – each post about aches, pains, pills and total cluelessness about the conditions they have is “worse” than the next!!

I don’t see how the enabling and encouragement of constant complaining is considered “advocacy” or “raising awareness” or “support.”

I believe that by teaching people to do responsible research, to gather the facts about the illnesses they have, and what they CAN do about their issues IS advocacy and support.

30. The fact that you read this list makes me feel:

Surprised.
🙂

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Today’s assignment: create a “must follow” list for our community.

Living With Bob – the best-written, honest and realistic look Ito the life of a wonderful gal with autonomic systems disorders, and the many weird comorbidities that come along with a true ANS disorder. Educational, humorous, poignant, unembellished down-to-earth truths,

Mental Illness Happy Hour – Fantastic weekly podcast and website and hilarious Twitter feed the explores the lives of those with “diagnoses” that live and function in out society quite well. As the het, Paul Gilmartin put it,m “it’s not a substitute for professional counseling – it more like a waiting room that doesn’t suck! Creatives (comedians, actors, artists, Gulf War vets and listeners are the weekly guests. You will know many of them, and want to know those those that are “new to you.” Website, mentalpod.com offers lots of surveys that you can take to anonymously share all those secrets, shames, struggles and frustrations. A forum to connect with other listeners is also offered. The Mental Pod combo is the best thing to happen to mental Heath since SSRIS!

WEGO Health Facebook Page: a home or health advocates – sponsors blogging challenges, offers round table discussions and provides info about upcoming events in which advocates are encouraged to attend and participate.