Archive for the ‘Depression’ Category

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. 

 

Appeared in the Boston Herald 9/22/2014.

Appeared in the Boston Herald 9/22/2014.

I was most pleasantly astounded by the results I received from the course of TMS (transcranial magnetic stimulation) I completed in June 2014. (Thanks again to Dr. Bruce Kaster in Needham MA and his wonderful nurses that administer the treatments.)

I felt better than I had felt in decades…for about 7 weeks. 

Now, the depression has returned. Full force. The F5 tornado has enveloped me again. And no one gives a damn. And if I had a quarter, I have no one to call that cares – yes, that is a reference to a well-covered country song…)

I send my [dripping with sarcasm] “thanks” to the resurgence” of my debilitating depression to my insurance company (Harvard Pilgrim) and every ignorant individual that makes decisions about peoples’ lives without even doing their own research or listening to those that have been helped by treatments that insurance companies “dismiss” as “sham, ” unproven” or “invalid.”

Why?

They refuse to let people that are helped by the treatments continue with maintenance treatments recommended by those that have done the research on TMS. 

Simply put – THAT IS INSANE.

So, I suffer, my husband suffers, and the insurance company spends more and more money on doctor visits and treatments they DO approve that DO NOT work.

As someone with genetic drug resistance (my body doesn’t metabolize drugs properly, which causes harmful and miserable side effects), I am literally left without options. I cannot take the medications offered for depression, anxiety, and PTSD. I know. I have tried more than 20 (twenty) of them over the past 3 decades. All kinds. Even “off-label” usage of anti-you-name-it drugs (when that was allowed by the FDA…shhh, don’t tell them, it’s STILL being done!)

I refuse to let my brain be mangled and disintegrated by ECT (electroconvulsive shock therapy) – odd how the FDA breezes past the myriad of reports of general log and short-term memory loss, “inability to recall autobiographical facts,” personality changes, loss of intelligence (measured by IQ points by those in the white coats). Why be treated just to be left live a life that is truly no longer your own? (Who am I to make this statement???? I base everything I say on personal knowledge  – in this case, personally knowing some sad humans that have suffered through this archaic form of treatment and become mere shells of whom they used to be – my education, my work experience and my ongoing research into treatment alternatives for depression and PTSD.)

So, as an alternative to the TMS treatments I NEED but cannot afford since insurance deems one course of treatment “enough” for a lifetime and denies all requests for any follow-up care despite professional recommendations for such care, I ordered the famous “Fisher-Wallace Device” (also NOT covered by insurance). Basically, it is a simpleTENS unit (powered by AA batteries!) that is allegedly modulated for various wavelengths for different ailments and claims to treat everything from chronic pain to migraines. And  – the FDA approves of this device!! WHAT??? And, the FDA allows them to market as “an alternative to TMS.”

BULLSHIT.

I call BULLSHIT.

Why?

I have been using this thing for 3+ weeks now. My insomnia is worse. I cannot sleep at night  – now, I get incredibly tired during the day and MUST sleep  – where ever that may be – so I am hesitant to leave home. I average 2-3 hrs of sleep per 24 hr period. Real healthy, huh Harvard Pilgrim??

My migraines, which had abated thanks to the TMS, are back in full force – 3-4x/week – making it impossible for me to drive at times. Thanks F-W Device. 

Everything from the cheap sponges that barely fit into the plastic holders that I have to wet enough so it will send the electricity “through my hair” (SPONGES?  This is like a “One Flew Over the Cuckoo’s Nest” flashback), to the way the lights flash on the unit even when the sponges fall off out from under the cheap elastic headband (they are supposed to flash only when “properly placed” per the instructions). And, not even a month of use and the headband is already stretched out of shape. What the hell is this thing? Seriously. I cannot believe this is something that is allowed to be sold on the open market – with a recommendation from “any medical professional” (including massage therapists, acupuncturists, chiropractors, physical therapists, etc.) – that claims to be a cure for a long list of ailments. The word” snake oil” comes to mind. As does the word “SHAM.” 

This is the perfect device for someone that will feel better if they are using something that feels as if they are being “treated” by an actual medical device – ya know, the good ol’ placebo effect.

I am not one of those people.

I am now just simply appeasing my husband and will use the thing for 45 days than demand my money back (less their insane $70 fee they charge for the return of the unit – oh- and they won’t credit your credit card back – they send you a CHECK. Wow – get with the 21st century folks!!). The same types of units can be purchased for less than $50 on the internet. This thing cost me more than 10 times that amount. 

I am probably going to stop my counseling sessions as well. It has reached that point of me just sitting there and being told I need to change how I think about things. Ummm, I WAKE UP depressed. I EXIST depressed. I don’t have to think about anything. 

No one had better mention meditation, yoga, Qi Gong, Tai Chi, Tong Ren – OR ANY OTHER PLACEBO-ESQUE THING I HAVE ALREADY TRIED. I have spent 35 years trying everything to feel better – to be “happy.” 

I did find something that works – TMS –  and, that essentially proves that there is something screwy with my brain chemicals – but I am not allowed to have it. Noooooo. I’m not rich enough. I’m too old. I don’t have the intrinsic value that other human beings have. Ask the insurance company that we pay for “coverage” – along with the government, they don’t think I am worth the cost of the treatment (but yet they give free care to people that aren’t even taxpaying citizens and consider them more of a priority and find it more ethical to offer FREE care to them instead care of their OWN people that have been and ARE paying for care).

Ouch – it really puts things in perspective. It really shows that no one really cares about anyone else. It is all just political posturing. 

If I had the physical ability to go back to work in biotech/medical research, I would work my ass off to prove how cruel it is to withhold care from someone that desperately needs it.

Take away message: don’t waste your money on a Fisher-Wallace Device.

Better to save it for your body disposal expenses. (Yes, there is a cost even if you donate you body to science after “demise.”)

 

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???

This is NOT going to be another rainbow, unicorns and bunnies post on using some natural substance, or some new form of yoga or meditation or voodoo acupuncture.

This post is about Transcranial Magnetic Stimulation (TMS). I will not bore you by droning about how it works and the successes it has had treating major depressive disorder (and migraines). You can do that here, an update here (this is a Medscape article – it may require signing in, but I’m sure that anyone reading this blog would have the sense and chutzpah to already be a free Medscape member! – or, here’s one last link from the company that made the machine used during my treatment course.

My depression is pretty much just the usual chemical state of my brain – BUT – this baseline depression has been grossly intensified by some exogenous events of late. My depression over the past year feels as if I was trapped inside of an F5 tornado.

An F5 tornado (photo source unknown)

An F5 tornado (photo source unknown)

Imagine that for just a moment. Try NOT to pay attention to all those things whipping around your head at impossibly high rates of speed – the heavy, black debris that keeps you from seeing anything but what is swirling around you – and try NOT to feel the fear, anxiety and despair about your precarious situation.

Now imagine someone trying to “snap you out if it” with platitudes, CBT, affirmations – or telling you to meditate to feel better. (I’ll bet you’d like to imagine crashing into them with that F5 tornado, huh???)

[Just a hint, people – never tell a depressed person to “snap out of it,” “grow up,” etc. It is a thoughtless, selfish act of cruelty to do so. See this link from psychcentral.com for a more complete list of things NOT to say to a depressed person.]

I have tried at least 19 different antidepressants over the past 30 years. I have tried every alternative therapy. Nothing has worked, or, I had horrid side effects  to many medications, or, how my body processes them (due to several genetic mutations I have known as “MDR” – multiple drug resistance). Hey, I didn’t choose my genetic makeup. My apologies to the medical community.

So, when it became obvious that I had to do SOMETHING about how depressed I had become over the past year, I was given 2 treatment choices (covered by insurance): TMS or ECT (electroconvulsive shock therapy). Of course, I chose TMS after much research into its origin, efficacy and safety. (And, I have never met a person that went through ECT that came out of the treatment course with their personality and intelligence intact. Nope- not the treatment for me.)

Bottom line: the TMS worked!!! I was a new person in about 4 weeks. Seriously, I can’t EVER remember feeling as good and as “normal” as I did – and it was awesome!!! My sleep and appetite improved. I wanted to do things and go places. I was even able to tolerate my chronic pain a bit better as well. And, I had much fewer migraines!

What is the treatment like???
It’s 36 sessions – 30 of them consecutive (5 days a week for 5 weeks), then 3 per week for the next 2 weeks.
I sat in a reclining chair, a cross between a big dental office chair and one of those used in blood-donor labs. I had to put those squishy ear plugs in my ears since the decibel level of the treatments can be loud. White paper tape was placed on my forehead to mark the positioning of the contacts. The portion of the machine carefully placed against my head was relatively small, and had 2 contact points, one on the left side of my head, the other a bit towards the right side.. A chime sounds to let me know the magnetic pulses were about to begin. (I liked that – with my startle response I would have jumped out of my seat if the pulses just started up sans warning!)  I will be honest. The treatments  – 4 second “trains” of magnetic pulses, followed by a 32 second respite in-between – were quite “uncomfortable” at first. It was not a “tapping” sensation as described in the research literature. It felt more like a repetitive bee sting – or a woodpecker with a large, sharp beak pecking at my head for those 4 seconds. As the treatments progressed, I grew accustomed to the feeling. Each session lasted about 50 minutes. Watching TV or chatting with the nurse during the treatments helped me acclimate to the weird feeling. I am grateful I had such kind, engaging nurses to monitor the treatments.

The issue with this treatment is this: the effects don’t “stick” with everyone. After less than one month of being without treatments, I already feel that tornado approaching again.

Twice weekly maintenance treatments are recommended by advocates of the therapy – and I now can completely understand why now that I feel the effects wearing off – but insurance doesn’t cover them. Of course not.

Each 50-minute treatment is $350 w/o insurance coverage. There is no way we can even consider maintenance.

Well, at least I got to know what it was like to feel “normal” for about a month. And, my husband had a happy, fun wife for a brief moment in time.

I’m grateful for that time, and to my TMS doctor for helping me decide to try the treatment, and helping to get the treatment approved by the insurance company

I honestly think the insurance company would just rather see me dead. There really is no alternative for someone like me. I CANNOT take any drugs. 30 yrs (off and on) of talk therapy hasn’t done much more than give me something to do on a regular basis.

As the tornado envelops me once again, I will try to remember what “normal” felt like. I imagine I will be way  too busy dodging self-hatred and anger at myself for being this “in-valid” person, like before. And – mustering the strength to “put on the mask” so others can’t see my pain.

If insurance companies would cover maintenance treatments, think of how much money they would save, not having to pay for the traditional care of someone like me…all that useless talk therapy/group therapy, etc….and all those medications that were useless or caused more problems… I think about how much better my life would be. And how much better my husband’s life would be. And it makes me even more depressed knowing that I make my husband miserable because of my health conditions.

Based on what I have read about others’ experiences with trying to get coverage for TMS maintenance treatments, the insurance companies pretty much stop short of saying they hope we will just off ourselves, as that will save them money.

If I can’t fight that tornado anymore, I hope that Harvard Pilgrim health insurance throws a party so they can celebrate how they selfishly helped one more person leave the planet. I want them to know that if they weren’t so ignorant about people with conditions like mine (just another zebra), I would be alive, and be a happy person with a happy family. But thanks to the judicial-esque decisions of their “death panels” (just an affectionate term for their grievance boards) – they will decide that I’m simply not worth it. My demise will be their fault. They left me with no other option. Oh, and thanks to the US healthcare system as well for supporting their ignorance.