My friend for whom we’ve been fundraising shares her story of deterioration by psych meds

this is an old post…not an ongoing fundraiser

Amy has been so crippled, traumatized and cognitively impaired by her circumstances she had to get help from her friend to write the below.  She also happens to be very very smart with a mind for medicine so she does go into some detail.

She has not had access to a computer. With much painful effort she has finally written to all her friends and asked that I publish the result here.

You are still welcome to continue helping her get into the appropriate care facility. She discusses her options below. Her family wants her to go to the most comprehensive and most expensive program but yet is not footing the whole bill, so all her friends, church members and this community is still encouraged to help.

Dear friends,

I write to you today very ill and in need of help.

Below please find a letter from my friend detailing my state today.  How I got here is a long story that begins with my first psychiatric hospitalization during which I was prescribed Ativan for a side effect of another medication and reaches its climax at my second and last one as I became homeless from the toll the polydrugging took on my physical and mental health in one short year.

But really it begins before that when an anonymous person slandered my work in mental health in 2007 inciting a nervous breakdown.  Ironically enough, my push for alternative treatments is now exactly what I need as genetic liver tests and GI problems have made it impossible for me to take psychiatric medications.  It is sort of fitting in a way but I have been wholly devastated.  During my last hospitalization I saved a woman from suicide who began stabbing herself in the stomach, witnessed a staff member molest my roomate and suffered a seizure and vasovagal attack and what I would like to call some kind of ego death during a traumatic cold turkey of Ativan.

I then went into a homeless shelter for two months.  You may ask where my family was during all of this and I wonder myself but must say they themselves are quite content with the western medical model and also all of them trauma survivors afraid of what my healing stirs.

Still, they are trying in a kind of disorganized way to help…this letter is from my friend to my family and they are now trying to get me into this “Bridging the Gap” program in Virginia and need all the help they can get.

They have been less in recovery than me and I am organizing them into trying to help me, sort of the opposite of what an intervention should be.

For 90 days there it will be $35,000.  There are also two other programs I am looking into including NOVUS detox in Florida (turns out it was a dangerous place) which would be between 10 and 15,000 and is just a detox and Alternative to Meds Center in California which would be 11,000 for 5 weeks (a deal I was able to work out with them).

Each place has their strengths.  Bridging the Gap is the most comprehensive as it is also a rehab but if need be I could get rehab up in NY.  Undoubtedly I will need a 90 day rehab.  California doesn’t have an MD on staff 24/7 and the IV nutrients are off site so my family is more skeptical, but they are more thorough in their testing and individualizing treatment.  Their program is similar to Bridging the Gap but they use no conventional medicine (a thing that is neither here nor there for me as in both places I will be slowly titrating which is the safest way off the drug).  I have come to understand I will need IV nutrients as my vitamin D and B have fallen far below normal.  I am regularly fatigued and out of my mind not being able to absorb food.

If I could take care of myself, get all the nutrients I need and guarantee my safety I would simply finish this on my own but it has reached a breaking point any of my friends can tell you.  It is actually past the breaking point.  I am devastated and isolated and unable as you will read below to take care of myself and live alone.  There is a detox up here that is willing to take me but even my insurance case manager is leary of sending me there as she has gotten a full picture of my health issues.  My psychiatrist is at a loss and has told me to go to a private center.

I have begun to consider myself somewhat of a Ralph Nader in that folks have been hesitant to contribute to sending me somewhere as they assume we will never get enough… $10,000 sounds like a lot of money.  But if each person on here gave $100 that would get me halfway to NOVUS.

If each person forwarded this to a whole bunch of other people I could really get the treatment I need.  I will be getting a social security check soon that will add at least $5000 in retrospect to anyone that helps.  At some point the psychological impact of the nightmare of the last two years of my life will need to be addressed.  Right now however I am extremely physically ill–down to 93 pounds, my clothes are swimming on me.  I have titrated from 12.5 mg of Ambien to 0 and from 1mg of Ativan to .25 and simply cannot do it alone anymore the cognitive and physical dysfunction has gotten too profound.

My insurance company has had a hard time getting me into a specialized medical detox because of my health problems which include Celiacs, Fibromyalgia, gastritis, asthma and hepatic encephalopathy (the list continues to grow), not to mention debilitating depression and slips into occassional psychosis (NEVER before an issue) from the trauma of the detox.  After my last psychiatric hospitalization I spent four weeks wearing the same pair of socks I was so cognitively impacted.

Some may think this is an uncommon benzo story.  Unfortunately, although it is not the norm, it is not uncommon.  Ativan seems to stir the most unusual withdrawal effects, especially rage, personality changes and gastritis.  I went to an energy worker yesterday who said indeed my rage is from the gastritis and that stomach anger is the most awful as it is not a resolvable kind.

Please read here Randy’s story. I wish I could say I am faring better than him but most of the time I am not.  This drug has made me consider legalizing euthanasia and praying to God to kill me that is how powerfully horrible it is but I know that is the drug and the withdrawals talking (most of the time).

I have a firm belief these drugs should be made illegal for more than 1-2 week use and ativan and xanax particularly.  They are the most addictive drugs on the planet but more than an addiction, their real danger lies in the fact that they are the most pernicious legal poisons on earth, destroying the body swiftly and silently–a chemical lobotomy, castration and arsenic vial rolled into one.

In fact, most people who do not abuse the substance, as I have not, are all too happy to be off of them when they are gone, though quite ill for some time.  I stare at the pill in disgust every day, trapped between its side effects and the withdrawal, getting no benefit, knowing it owns my body, believing with every inch of my being that it will kill me, from the malabsorption alone, if I do not get help.  I have begun to think of it as an abusive spouse who one must plot and plan to leave silently and then make the most thorough break from them possible.  And it is true, like in leaving an abusive spouse, that leaving this drug incites in many people more danger—suicide, violence, cognitive disrepair and dt’s that can last for months.

In fact the AMA does not recommend rapid detox it is so disruptive.  Literally the only drug you cannot just stop taking.  And so I look to leave as effectively as possible, with the right supports, so that I will never have to return to this abuser again and so that I will never have to spend months of my life in a psychiatric prison watching people be abused and having food thrown at my feet after passing out with no one taking my vitals and being told to “eat”.

My withdrawal is complicated also by a pituitary cyst that I have which leaves me hormonally imbalanced to begin with and since benzodiazepenes act as fake progesterone, withdrawing is like going into intense estrogen and testosterone dominance mode.

This makes the rage worse than most people’s withdrawal and also would require a facility, preferably knowledgeable in endocrinology, to help manage this.  I have contacted a neurosurgeon to have the cyst removed but they will not with Medicaid.

Ativan withdrawal also tends to skyrocket histamine levels and since I have pre-existing allergies titrating has complicated my asthma and gastritis such that I can no longer eat dairy, nuts, seeds or fish and so am getting little to no fats for my brain to feast on.  I am beyond even natural outpatient treatment at this time.  Less like dying and more like the walking dead is how I feel.  Folks have even commented to me that I look dead.

A few weeks after getting out of the hospital I developed my first suicide plan which was to jump over Niagara Falls on March 11th, the day after my little sister’s birthday (didn’t want to mess that up for her…irrational, I know).  The next day, and I have saved the article, a man tried to kill himself by doing just that and survived, one of the few in history.  I never made it up there as I was too tired.  I tell you this because perhaps I take it as a sign that I too can survive what has become almost the impossible.  My life in any case was never meant to be lived small.

My promise to this community is that if I get well which I am really hoping I do, that I will return to provide low-cost assistance to people who are trying to get off of these drugs as I probably know more about them now than most doctors.  I have for many years been considering naturopathic medicine as my field of study.  This Ativan debacle has eclipsed me from reaching my goals and the depression is so severe I dare not even think about them now.  I do not consider myself ever having been truly mentally ill beyond help from vitamins and counseling until this drug.  Unfortunately, I did not encounter natural medicine in time.  Now I cannot even take vitamins my stomach has been so destroyed.  Please help and please spread the word about the dangerousness of benzodiazepenes when used on a chronic daily basis.  They are no more and no less from Satan himself.

For those who do not know me as well as some please refer to my website, last updated before the slander at work, which will reveal I actually had quite a knack for poetry and peace before this drug took control.

The email below contains a link where you can donate.  All money will be returned via paypal if not enough is raised to send me somewhere.  And while I do desperately want to be well, please realize I AM in the grips of addiction and withdrawal and so am not myself.  Please forgive me for this and if you get a chance read the book “Accidental Addict”.

thank you-
Amy

“Love the earth and sun and the animals, despise riches, give alms to everyone that asks, stand up for [those with disabilities], devote your income and labor to others, hate tyrants, argue not concerning God”
-Walt Whitman

From Amy’s friend to her family,

Dear Amy’s family,

My name is Jen and I am a friend of Amy’s.  I have been caring for her dog Madeline for about 7 months now.  I met Amy about a year ago.  I have been spending time with Amy twice per week helping out with practical things.  I am here with Amy now formulating this email in an effort to clarify and organize the thoughts she wishes to communicate.

When Amy checked herself into Brylin it was in an effort to get help and ended up traumatized and more ill.  After leaving there she went into a homeless shelter for a few months.  The employees there helped Amy receive welfare ($150/month), food stamps, and helped her apply for social security.  They also have helped her with housing and she is now in her own apartment which allows dogs although she is not able to take care of Madeline yet.  She has a case worker who only provides transportation to appointments (who is not totally dependable.)

Amy’s health condition is as follows:  encephalopathy (swelling of the brain which causes cognitive disturbances, convulsions, personality changes and puts her at risk of a coma), gastritis (which causes malabsorbtion, nausia, abdominal pain and repeated GI infections with blood in the stool), an undiagnosed issue with her liver and gallbladder which her doctor is looking into, a high level of anxiety, trouble sleeping and trouble organizing her thoughts, setting goals, and often is unaware of her rage, therefore has not been the clearest of communicators which is why I have offered to help her out.

Amy needs to come off of Ativan completely as her doctors agree, but because of the severity of the damage this drug has caused her body she cannot do it alone.  She literally has no energy and is barely able to cook for herself. Some of her friends, like myself, have been coming over to cook and clean, remind her to brush her teeth and chat with and console her.  What little we are doing is really not enough.  Amy needs the medical and psychological support of the right facility as she has so many health issues and allergies.  This is why she is constantly doing research on where she can go to get the help she need to return to some level of health.  Understand that this research process as well as being her own advocate with the various doctors she sees has taken it’s toll and she is often totally exhausted.

Bridging The Gap in Virginia, appears to be the best option right now as they will be able to slowly titrate her at the same time provide IV nutrients (she cannot take oral vitamins or supplements) physical rehab, psychological support and the 12 step program.  The cost for 3 months will be somewhere between 20 and 30 thousand.  Amy checked and Medicade will not cover any of this cost.  A friend of hers who has gone through a similar battle has begun an online fundraiser for Amy and has raised about $1500 so far.  The link is:

Click on the funny looking link—the button doesn’t work:

https://bipolarblast.files.wordpress.com/2009/01/btn_donatecc_lg1.gif“>

Amy will be able to contribute $4000 when her social security check comes in.  Then, her monthly budget which will only be from social security, will allow her to contribute about $100 per month to the payment plan worked out with Bridging the Gap.  The person to contact to work out this plan is Sue Dennis who Emily already spoke with.

In previous emails from Amy, she sounded very angry and demanding and feels bad about that, but understand that she has trouble managing emotions because of the withdrawal symptoms and the dementia caused by the encephalopathy.  Also the reality is, she has been alone, has survived some very traumatic events, is extremely anxious and feels unsupported, she has been in a state of panic for months and is really not well.  I  know Amy will get through this but needs way more support than what I can offer.  I am really concerned because in the one year I have known her, I have seen her loose an extreme amount of weight (muscle mass) due to malabsorbtion, and she now at times paces and shakes uncontrollably.  Amy is a very passionate, good natured, creative and loving person who deserves to return to a life of health with the support of her friends and family.  I hope with our collective efforts we can help her get there as soon as possible as the Ativan has left her in a state of crisis she has been trying to manage for about 12 months now.

Amy regrets not being able to be there for Emily’s graduation.  Amy is getting some support from her sister Jen who will be attending tomorrows doctor’s appointment with her. Please understand that Amy is in a fragile state and is usually tired.  What she really needs is support and love.

Thanks,

Amy and Jen