Archive for the ‘Pain’ 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.”

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.

Abandoned...like a polar bear on an ice floe

This is me.

I’ve literally been abandoned by my last remaining health care providers.

This is exactly how I feel as another boot strikes the edge of my ice floe. I float out farther into the icy waters, towards a slow and certain demise.

Each of those boots belong to a health care provider – a staff member of a hospital – even a “Patient Advocate” at a world-famous hospital in Boston. Names will follow. I will not go silently into that good night. They will be decloaked. Stay tuned.

Who put me on the floe?  I was forced there by the medical “professionals” that refuse to be proactive. They can’t be bothered to pick up a phone and call a colleague to see if they can help me or even ask, perhaps, if they know someone who might.

They can’t be bothered to do a simple internet search to find out how to treat someone with my rare and complex conditions.

(I’ll even tell them where to look…Medscape, Mayo Clinic, NCBI, Vanderbilt University, Google Scholar.)

It takes seconds.

If I do that, I will be labeled and ostracized (remember the “Seinfeld” episode where that happened to Elaine Bennis?) and my fade-out into black be hastened by their turned backs.

They forget I’m intelligent. They forget I have medical background and medical training and decades of experience advocating for myself and my mother.

[How tragically sad it is when I think about how poorly she was treated. I am being treated just like she was, so she ended her suffering. She too was shoved onto an ice floe. And suffered for 9 years despite of everything i tried to do to help get her some “care.”]

These so-called experts don’t and won’t even pay attention to any of the recent FDA approvals for treatments that could help me.

They won’t pick up the phone and reach out to specialists in the area to dee if they are interested in helping me.

They mindlessly throw out referrals to random places that I have already been (they don’t bother to read my record – to learn about ME), They tell me to “learn to meditate” or “do yoga.”

I have. I did. I am unable to do so.

Then, they insult my counselor. They tell me to talk to her – or that I need to find a new one.

Read my file. (Oh no – that would take time! Doctors are far too important and busy to read a patient’s file. “Only 5 minutes” – “only 2 questions” – “what ONE condition do I want to talk about today?”

Learn about my medical conditions. Read my file. Care about me. Please. Someone just CARE.

Don’t treat me as if don’t matter, as if I am a waste product – isn’t the first line of that all important oath that you take, “First, do no harm?”

Well, your acts and omissions ARE doing harm. Wake up. Pay attention. Realize what you are doing.

Every time your shove me further out into the icy waters, away from you so you won’t have to deal with me, you hurt me. You hurt my husband.  You hurt human beings.

As in the excellent movie, “Gattaca,” I am reduced to the status of being an “in-valid.” One that is not worth the time to help; to waste resources on; to listen to; to treat. A lesser part of society. Disposable.

Shove my floe again. Go ahead. Perhaps you will get lucky and YOU will be the one to cause me to wither and die sooner and the you will not have to be bothered with another patients like me. You can spend your time treating sniffles and GERD and Type 2 Diabetics. Tell them to meditate their problems away and be mindful to help their conditions improve.

But one day, your inattention to patients like me will catch up to you. I promise.

I intend to be on that list of those that YOU ignored and let languish on our ice floes.

Any talents and contributions I had the ability to make to the world will vanish as my floe heads farther out to the horizon – out of sight, out of mind. Good riddance.

I will expose you for your acts and omissions –  that will be my last act. That will be my legacy.

TOO harsh?  Well, that is too bad. This is how I feel.

I have been kicked out of the human race, shoved out into the cold, icy world alone to slowly die. All the boots that have shoved my ice floe farther into the icy waters – my former PCPs, my PCP’s practice, my former orthopaedic surgeon, my anesthesiologist, my former autoimmune doctor, my former cardiologist – all have turned their backs on me and returned to their warm and spacious mansions and forgotten about me. I am just an insignificant blip in the world. After all, there are 7 billion others (and counting – God help us…) Why care about just one?  Especially another one over 50. The world belongs to GenX and the Millenials. Those of us that are Boomers, well, we are just wasting the resources that should be reserved for THEM. the sooner we perish, the better.

I am disposable and useless.

At no time in my life have I felt this hopeless and alone.

I have been forced to return to scouring the web to find any information about my chronic conditions and any doctors that may be interested in seeing a 51 yr old with 4 chronic issues and multiple drug resistance genes. No one is interested. Not a single doctor in the Boston area.

You would think I live in Antarctica. No. I live in Boston. Great medical care?  Cutting edge medical care? Bullshit. Not when I actually have to explain to a physician what an :Autonomic Nervous System dysfunction is, and I watch them blink-blink-blink with wide doe-like eyes during my explanation. Are they even listening to me? Or are they just thinking about buying another Berkin bag or the color of their next Bentley.

Angry, arrogant doctors not interested in listening to a patient with tangible and complex conditions? Yes. Boston is their Mecca.  Don’t believe the hype. Listen to the patients that suffer because of their omissions and arrogance.

I am a compliant patient  – but there reaches a point at which it should be (SHOULD be) apparent these “conservative” (seems to be the latest buzz word) treatments aren’t working. I think 17 years should be good enough. No matter how many times I repeat these “conservative” treatments, costing me thousands of dollars, I get no better. In fact, I often get worse. . But that doesn’t matter. The quicker  I get out of their office – out of their sight – the doctors feel as if they can justify their actions – they have done their job. (Yes, I see you looking at the clock and glancing at your watch every few moments. Thanks for the disrespect. If you would take the time to read my file, I wouldn’t have tor repeat myself very single time I see you. If you would communicate with specialists before you refer me, I wouldn’t be wasting their time, boring them with a life story they don’t want to hear.) HOW RUDE.

Thank you, dear physicians,  for hastening the arrival of another cadaver for the next entitled overachiever to pick apart and insult in their gross anatomy classes. 

 

Made by me on someecards.com

Made by me on someecards.com

I recently posted that received a course of TMS (transcranial magnetic stimulation) to knock back a major depressive episode.

However, I failed to mention that I experienced several other changes in symptoms  – symptoms other than the “F5 tornado.”

There HAS to be a connection between whatever the TMS does and the symptoms from which I experienced relief…which leads me to believe that the doctors are missing a serious connection between all my weird symptoms that make me the zebra I am.

So, what changed during treatment?

1.  Much fewer migraines….

2.  My odd and unexplained breast regrowth ceased – along with the pain that went along with the growth. (I had a reduction Nov 2013 due to the major and PAINFUL increase in size of my breasts from a 34DDD to a 34I in 4 yrs). My reduction was “supposed” to bring me to a 34C. HA. I quickly (and PAINFULLY) grew from that alleged size to a 34DDD in 4 months post-reduction. NOTE: all hormonal and endocrine levels always test “normal” – even though any bachelor’s level bio student knows endocrine levels can change on a moment-to-moment basis, the doctors that order these tests seem to stand firm that everything is “normal. Yeah…right. As the Ghostbusters always said – “we are ready to believe you.” NOT.

3. An increase in dreams. Some good – some bad – but all were vivid and memorable.

4. Longer periods of deep and restful sleep (I wear 2 “life trackers” that monitor sleep because of my weird sleep history (See my prior post on DSPS  – delayed sleep phase disorder).

5. A marked increase in sensitivity to medications: Clonidine (a BP medication), and MSIR (morphine sulfate immediate-release).I had to completely STOP the Clonidine as the effects that it caused during the TMS were debilitating – I literally would be unable to wake-up for 14+ hours if I took even half the smallest dose.) I take the MSIR for chronic back and leg pain I have had for 16+ years  – and the 6 surgeries I have had have failed to completely resolve the pain. During the TMS sessions, I required a lower dose of the MSIR to get pain relief, and, for the first time, I experienced side effects (a bit of nausea and extreme sleepiness) from my usual dose and had to reduce it by half.

6.  I had far less incidents of low blood pressure (associated with my Autonomic System Disorder – I have many posts and links to others’ posts about this condition on my blog.

What has happened with these symptoms since I ceased treatment one month ago?

1.  I am once again being awakened by migraines – with nausea, photophobia and positional increase in pain. I am getting 2-3 migraines per week.

2. My breasts are sore, lumpy and swollen. Gads, I hope they are not growing again. I just bought new bras because I though the growth had ceased.)

3. I am still dreaming, but less frequently. And they “loop” – much like they did before the TMS.

4. Problems getting to sleep AND staying asleep. (And, I cannot take any sleep aids due to the side effects I have from any meds used to sleep since this odd Autonomic Disorder I have kicked in back in 2012.

5. I have had to increase my MSIR dose back to pre-TMS Levels. I seem to have more pain in my back as well.

6. My BP and heart rate are becoming much more labile (variable) again. I have had to take additional beta-blockers recently to address the increase heart rate and chest pain.

Sooo….what is the connection? So far, none of my doctors have tried to solve this mystery. Why not?  A simple Google search can provide clues….

Which is what I did. It didn’t take long at all. I am an experienced researcher with decades of research experience so I know how to word my searches to get the best results. I am sure that diagnostic research was covered at some point in medical school.

What did I find out?  All of these things are connected in some way to DOPAMINE levels, and are things that are effected by what is known as the HPA (Hypothalamic-Pituitary-Adrenal) Axis. (Check out the link for hundreds of images from sources that could provide clues to my doctors….note the 3 words I used for the search…real rough, huh?)

HELLO? Can someone PLEASE tell me why a single medical professional cannot take this information and try to help me?  Doesn’t anyone care about me and the quality of my life???

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.

I just spent three hours researching the advances in pain neuromodulation technology, suitable for someone with my condition. I had a conversation with my anesthesiologist that had left me “hopeful.” (I will live to regret feeling this way. Just wait…) Based on what I found, perhaps they’ll have something suitable for my condition 10 to 20 years after BItcoin becomes the World currency – not in 6 months, and not in a couple of years like he had mentioned.

So much for “hope.” How dare I think positively about the possibility that there might be a treatment out there that would be helpful for me.

As I have always said, “there’s no room in medicine for hope or unicorns.”

I have reached the end of my rope.

These sleepless nights are complete hell for both me and my husband.

My pain doctor tells me that there are no options left for me – in the United States anyway, until the U.S. decides to catch up with the needs of patients like me, as have other countries in other parts of the world the recognize that patients with chronic pain need pain relief – other than drugs – so we can sleep.

I’ve tried every intervention, Eastern, Western, New Age, etc., all to no avail. I’ve had six surgeries just for this pain issue. And I am STILL left with miserable pain that keeps me up at night, that now, due to the fact I can only lay on one side, my L rotator cuff that has already been repaired twice is re-torn.

I am left without options. Basically, I am a useless pain generator that takes up space in my tiny condo and hurt myself somehow whenever I try to do more than walk across the room (i.e., laundry, vacuuming, emptying dishwasher, etc.).

I’m not even going to mention the other chronic health issues I have to deal with. Compared to this pain issue, those are soooo secondary.

Please don’t tell me to try this exercise or that therapy or meditate or pray or try yoga etc. I’ve done all that. Remember, it’s been almost 17 years now that I’ve been dealing with this. And it’s been almost 17 years that I’ve been misdiagnosed by doctors. I have FIVE pages of “interventions I have tried…and yes, I have seen a Shaman and had my Chakras cleaned. And had prolotherapy…I just know someone wanted to throw that one out there.

Most people are “new” to the chronic pain community…they have suffered only a few months or a few years. I’ve lost who I was  – my life, my career, my motivation, my friends – all because of being a person in chronic pain. Try 17 years of pain….multiple surgeries….countless treatments…and still being in pain.

And alone. No one wants to be friends with a person that has chronic health issues.

No one wants to help a person in chronic health issues,

[I’m not bringing up all the misdiagnoses that occurred since I was 12 years old…That’s a whole other set of stories for another time.]

My point writing this blog entry?

To illustrate that all the good intentions, the finding of promising research, and having a great PCP, really doesn’t make a difference when there is absolutely nothing out there, short of suicide, that’s going to take away this pain.

Those of you with chronic illnesses know that finding a support system is not easy. I don’t have a support system. Literally – well, other than my husband, that can take me to an OCCASIONAL pain management appointment. Since he is not allowed to take days off from his job without repercussions, he can only do this on work holidays. This means that the treatments that I’m able to receive are few and far between, and not in line with the recommendations of the doctor.

Nope, and there’s not a single soul on the face of the planet, that has the time, inclination, ability, desire or compassion to help me get to these appointments that I desperately need to go to to get the help I need.

I know. I had the pleasure of being humiliated when I’ve asked and watched them struggle to come up with excuses as to why they “can’t.”

Perhaps is just because I live in Massachusetts, and that’s the way people are here – too busy and too self-involved to help anyone else that’s in need.

My suggested solution?

How about a service, something like “ZipCar,” in which  you can “rent” a “responsible person” to accompany you to these appointments and drive you safely home after your procedure????

Hmmm… I wonder if TaskRabbit offers a similar service…I know that works on a bidding system. …

[Yes, I know there are medical transport services available now, but they charge exorbitantly high prices (minimum $250 PLUS mileage!!!!), and that is not exactly budget-friendly someone on disability.]

Ideally, some altruistic person or agency could open up a respite home for those in chronic pain like me. We could all be put together so we are no longer a burden, a hassle, an annoyance and/or exasperation to what family we have left. And, we would not annoy them when we can’t sleep through the pain that we are all in all night. We could all sit u together and try to distract each other from the pain we are in. (Like me, tonight.)

Oh, wait. That won’t work, either. This is Massachusetts. No such place like that could ever exist here. Never mind!! What was I thinking?