18 months since I jumped: An update on healing

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I am able to recognize my blessings each day and be grateful for all I have and have hope for continued blessings in my future!

Greetings from a highly improved me!   It has been eighteen months since I jumped (abruptly discontinued) from taking Ativan 1mg daily after tapering from taking Ativan 3mg daily. I tapered over the duration of two years. My severe detox and withdrawals period was exacerbated by the fact that I had jumped off Oxycodone 10mg only two months prior to stopping the Ativan.  I had tapered off a daily dose of 45mg-90mg over a 2 year period.   What had started in 2010 as a prescription for Percocet 5/325 one every 6 hours as needed for pain, grew until it became a monster in my life that ate all the goodness up. It was just one of the numerous medications that I was prescribed over two and a half decades.

From my records dating 2010 until the fall of 2017 I had 19 pharmaceuticals prescribed to take on a daily basis. Many of them for longer than the recommendations written in those little tiny informational packets you get sometimes with a bottle of pills. Many of them were also prescribed for things other than what they were originally created to treat. Off label uses.  My PCP (Primary Care Providor) also had recommended numerous over the counter medications and supplements as well.

 

                                                                I can smile so much easier these days 
I had been quite aware of the perils of addiction as I have personally witnessed and experienced it in my life in many forms and throughout many experiences.  My own addiction (maladaptive coping mechanism for suffering) was gambling. I knew what it felt like to not only crave something, but would go to great lengths to have that need fulfilled.

That is NOT how the medications were for me. I was dependent upon them. I took them as prescribed. I was trying to check IN to life. I was trying to find a way around the pain (both physical and emotional) so that I could participate in life. Yet the conditions continued to mount until the amount of medications my PCP prescribed became toxic! They didn’t work anymore.  In fact, some of them created a paradoxical effect, causing the exact symptom they were meant to treat.

When I recognized that the use of all these chemicals was harming me more than they were helping, I knew it was time to make radical changes in how I was managing (or letting my PCP manage) my health. I took back the reigns and sought a different path
It wasn’t really a conscious choice, embarking on the journey through the hell I have been through.  It was simply the act of starting a forward movement towards change by doing just one thing differently. Then it grew to more things differently. Things like spending a lot more time outdoors. Activities such as interacting with animals and being creative with a camera. Making very conscious choices in what I put into my body. Eliminating as much negativity as I could. Yet, there were still struggles as I didn’t know all that I would face along this journey.

No one had warned me that there was a possibility that I could have psychotic episodes coming off these medications. No one had warned me that I could reach tolerance and have paradoxical effects like a severe case of insomnia that lasted for 20 years. Only now, after being off every single medication for 40 days, am I beginning to have occasional bouts of normal sleep. No one told me about excruciating bone pain that left me curled up and rocking and crying on my mattress. No one told me of the incessant need to move, the rocking and bouncing legs and full body restlessness that was exhausting and robbed me of any rest for my ravaged body and brain. No one prepared me for how shunned I would feel and how that would further the crippling agoraphobia and paranoia so that I could not tell who I could or could not trust. This further complicated the entire process.
No one else knew how bad this would be either. I know now that there was NO one in my life anywhere close to prepared for the wild and horrifying symptoms and behaviors this would create.  It was terrifying to go through and I can imagine it was scary as hell to watch! In fact, knowing many others who have endured the hell I have, some even worse, I know that very few people in the world have been prepared to be of any assistance for someone going through this type of severe and lengthy mental and physical anguish.
That first year was a doozy! Fraught with the loss of health and home and any stability I believed I had, pretty much everything was gone in my life! Friends, family, belongings, any sense of dignity was gone.  I was robbed of all hope by the Benzodiazepine demons that lived in my head. All I did was bounce where the winds took me, trying to protect myself from me, and from others who were ill-equipped to be of any help.

Unfortunately, sometimes due to their lack of understanding or skill, those I most hoped would help were only able to add to the pain and suffering by their responses and reactions to me.   Those that truly care would have done different if they had known how.  I believe this is true for all of us suffering from this.  Yet they are the ones who just mostly stood by and watched and felt helpless. They had nothing to offer except recognizing the pain was there.  Today I can feel bad for their experience in watching all of this hell.

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This last 6 months I have turned a corner. I can feel it internally and others have commented on it externally. I have been more focused on myself and finding healing and seeking the path to wellness than ever before in my entire life.  The tools and skills and interactions and experiences I have participated in have helped me have a sense of acceptance and peace.  I truly feel more equipped to deal with whatever life may bring to me from here on forward.   More than ever before in my life I have a sense of direction and purpose.
I still have much work to do. Both of my current therapists are recommending intensive treatment for Complex PTSD (Post-Traumatic Stress Disorder) including modalities such as ACT (Acceptance and Commitment therapy), CBT (cognitive behavior therapy), and EMDR (Eye movement desensitization and reprocessing). Both of them say it is imperative for me to do this work for complete healing and the ability to get past the things that haunt me regardless how much I try to not let them.
I personally have taken it upon myself to learn life skills that I have found are helping me tremendously. I have adopted the practice of meditation. I meditate at least once daily, but usually twice a day. MY meditation is very much connected to my spiritual practice and prayer time. I also do Conscious breathing, utilizing a timer to just stop and breath once an hour. These skills have reduced my anxiety tremendously and are excellent for staying in the moment which is so necessary for those with PTSD.  I eat at least an 80/20 whole foods diet, primarily organic in nature and from sources as local as possible.

Since the New Year I also have been working on having the habits of movement (exercise) and drinking more water daily. I have also begun light jogging. This I am doing still with living under the fact of pain is in my life. I have nerve pain in my feet that is non-stop 24/7. I also have pretty severe back and neck pain. Yet after a 10 week-long session at a pain clinic, I have learned some wonderful new ways of looking at pain and living with it. This is why I now am more encouraged and hopeful than I have been in an extremely long time. I feel very empowered.

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Yet I still need help. I am still homeless. I still have no vehicle.  I am still awaiting a determination on my most recent filing for Social Security Disability. I still have a couple of years ahead of me doing some really difficult personal therapies. I still have limited energy and endurance.
After careful consideration, counseling with others, and making efforts to find stability and a place to live and work both where I am and where I last came from, I have decided to go back to S. Oregon.  I have more work I can do there than I have been able to find here.  I ran an ad and I have already booked 3 house-sitting gigs. I also have a couple of clients that want me to do periodic light work around their properties (gardening and housekeeping type chores). I have a friend who has offered me the use of her trailer for 11 months, and I have a couple of possibility of places to put it in exchange for helping on a person’s property either with care taking or with farm type chores.  I am willing and able to do this. It won’t be enough to get ahead, but I will have a roof over my head and some security for at least that time period.

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I have been offered a trailer like this to use for about 11 months if I can get a secure place to park it! High living for a modest gal like me!

What I need more than anything right now is a vehicle and maybe the first 6 months of insurance paid.  Or even the first 3 months. Then I can get to the house sitting jobs and the clients who have other chores to do. Then I can earn a few pesos each month. My goal is $600, which is 30 hours a month. I will most likely have to do that many hours again where ever I end up parking the trailer in exchange for rent.  That works out to about fifteen hours weekly of being up and moving and doing some sort of physical activity.  15 hours a week is about all I can do without being where I can lie down and rest intermittently.
I know I will keep improving as I continue to do the habits I’ve created and use the tools I have obtained. I know my energy will increase as I continue to lower the stress of dealing with PTSD through the time invested in treatment and as my body continues to heal from the damages done by the medications I took for too long!


I also am involved with Vocational Rehabilitation.   They are going to help me pursue the reinstatement of my nursing license. It is my short-term goal to utilize my nursing license in creating a health and wellness mentor and coaching business. I believe I have a vast amount of knowledge and experience that can be used to help many others who live with physical and emotional pain. I believe my new-found enthusiasm and gratitude for a new opportunity can encourage and inspire others to pursue their truest selves! I have been a helper and have had a healing nature throughout my life. Now that my true self (not drugged by pharmaceuticals) is re-emerging stronger than ever, I trust that God and the Universe will allow my best self to help others possibly find their way out of suffering too!

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Participating in an online Health and Wellness coaching program. It is self directed and self paced. Perfect for me right now. As well as it is FREE!!!

I am so grateful I am still here on earth and alive. I am so grateful the benzodiazepine (and other pharmaceutical) demons did not completely destroy me. It felt like I was destroyed at times, yet here I am smiling and grateful and caring for myself….and others!

After such a dark and seemingly endless foray into the depths of psychological pain so deep I felt life wasn’t worth living, I now have hope!!!  I also am able to develop goals.  It is the first time in many years I have felt capable of even thinking of having a goal, let alone taking the necessary steps to get there.  One of my goals is to  jog/run in a 5K event the weekend of my 56th birthday.   My new walking habit inspired that goal.  I have never enjoyed running or jogging, even as a child.  Yet now, when pushing through the chronic pain, I find that I reach a point of some real clean current pain and it is a desirable experience.  Pushing past the pain to get going is worth it.  The daily steps I am taking are to keep me focused and to build my skill and strength level to reach that place of being able to complete the race.  After the race,  if I still feel it is something that is adding value to my health and life and wellness, I may try for a 10K.  It is a measurable success.  There are other goals as well so each day I purposefully do actions to bring me closer to the prize…..WELLNESS and HEALING!

I also have a great aspiration to help others like me!!! I have a big dream of someday creating a healing place (long term inpatient facility) for those like me who have suffered in their lives with DIS-ease of any kind.   People wanting to come off pharmaceuticals that have become toxic to them, especially opiates and benzodiazepines; those who suffer the consequences of addiction; those who have emotional pain that requires that they be loved on and guided and encouraged to health! I envision a place of many woods and streams and much beauty where people can rest their tired minds and bodies and take a few deep breaths for a period of time. I see gardens and animals, some of them providing companionship, others there for their food source to provide healthy nutritious meals. It will be a place where there is patience and tolerance and gentle trauma-informed guidance. People will have a time and place to explore their suffering and learn skills for finding peace and acceptance of what is.  I dream of it being a place they will also find a sense of purpose and the ability to create goals and plans for achieving them. It is a big dream. It will require a big tribe to create it. That will be a huge focus on the next portion of my journey. Creating a healing caring loving tribe that can share this vision! 🙂
oh….btw….it feels great to be able to write a bit! That is one skill that has suffered during this time and it is another sign of my healing!

7 tips for managing symptoms while coming off mind altering pharmaceuticals

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This is a list of a few positive helps I’ve noticed that seem to be helping myself and others. Observing those in the groups that are coming off various medications, including Benzodiazepines, Opiates, anti-depressants and anti-psychotic has helped me learn. These observations are not scientific in nature and I have nothing to back them up except from what I’ve observed and experienced myself.
This list is not comprehensive in nature. Each individual observed may have been doing one or many of the listed actions in helping themselves manage their symptoms through detox and withdrawal.
These are the actions that folks are taking that seem to help them MANAGE their symptoms better. WE are unable to control them and time is a big factor. This list is things you can do NOW to help yourselves.

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1. Get outdoors!!! Even if it’s only to sit on your front porch and feel the sunbeams on your face or smell the fresh rain that just dropped or to shiver in the snow. Increase the duration over time. Maybe after successfully sitting on the porch for a week, you can walk to the mailbox the next week and then complete the activity by still sitting on the porch for 5 minutes. My personal experience with this was that, over time, I went further and further and felt so much better each time I got out to walk! Fresh air is crucial and this activity will also give you a sense of accomplishment and satisfaction.

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2. Exercise. As noted above, it starts small. Walking back and forth to the mailbox. Then walk to the end of the block and back. Then around the block. You get the idea. Mild exercise is excellent for boosting mood and for helping break the trail of lies our mind tells us that we are too sick. Yes, we are sick, but nearly every person is capable of doing something to stretch and strengthen their body! I personally have been trying Yoga and Qi-Gong and find them very helpful for me.

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3. Eat clean and stay away from sugars, gluten (I eliminated all grains), processed foods and many are sensitive to dairy. I personally eat a diet consisting of local and organicially grown meats and eggs and vegetables. When folks say they can’t afford to eat organic I remind them, I don’t do Starbucks, sodas, fast food, and I have no vices. Food is fuel for my body and it ranks high on the budget. Eat nutrient dense foods and you will feel better. Check out the book “It starts with Food”.

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4. Find a support group or a supportive group of folks you can talk with and be authentic with. This is probably the hardest, as our minds tell us we aren’t worth anything and we feel so brain damaged. Yet, those who are most functional have peeps! I go to a variety of support groups and have found a family that way. I highly recommend Refuge Recovery. It is a Buddhist based recovery program for ANYONE who is suffering. While many of us do not in any way fit the description of addict, we were dependent on our medication and not having it anymore creates huge anxiety within us. These supportive groups can be a place to learn coping mechanisms and learn tools at managing emotions.

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5. Don’t take supplements or OTC remedies. Each pharmaceutical that is touted to help one symptom has at least 2 if not more toxic potentials. I personally am not completely against all pharmaceuticals, but reaching for one every time something doesn’t feel good is not a healthy solution.

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6. Learn coping mechanisms. Regardless the reason you were started on one of the medications I listed above, it has left you with a state of anxiety and various other symptoms. Those who are practicing meditation, working with a therapist, reading books on emotional regulation or some sort of personal responsibility for managing their emotions seem to fair better over time. While it may not eliminate the symptoms, it will alleviate them.

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7. Find acceptance for the situation and have patience. The days and weeks will pass (for some months and years) but we can’t change that. Accepting it lessens the fight. There is much to be said for time. It does heal so much.

I truly hope for each that these tips are encouraging. They are things you can DO to make yourself feel better. They are things that YOU can do for YOU! We must be kind to ourselves through this process. We didn’t ask for it, but we still have to learn to maneuver it. We can’t control it either, but we can manage some of the symptoms. That is what this list is for, some management tools that I have seen helping those who are healing and moving forward.
Peace and Namaste

 

My “remarks” to the Social Security Administration

I finally completed the Adult Function Report that was necessary for my application for disability.  It literally took me a few weeks to complete it.  At the end of the form is a place for remarks.  This is what I wrote. 

 

[Trying to explain how my life has changed in the format you have provided proved to be extremely difficult for me.  If you were to look at my work history through my entire adult life, you will see that I have always worked in physically demanding jobs.  Waitressing, landscape maintenance, pre-loader at UPS, CNA, nursing.  Often I was working a second job or going to school part time in addition to working a regular job. I did all I could to provide for my 3 children after I become a single mom when my kids were 1, 4 and 5.  I did not get help from their father or anyone outside the home.  I participated in PTA and Scouts in addition to caring for my children and my home.  You also would be able to see how over time my income slowly but steadily increased.  It took me nearly 10 years to obtain my goal of having an Associates Degree of Nursing since I was putting myself through school while raising children.  It had been my hopes and goals to continue my education after a few years of paying off some debts while working as a RN.  I had hopes of obtaining my BSN and eventually my Master’s of Nursing.  I dreamed of working  and buying a home.  I hoped to do some mission work to share the talents I had honed in nursing.  For the first time in my life I had finally been able to earn a decent wage and my children were grown and gone from home and I was able to financially have a good life.  I had some options.  I had health care.  I had the beginnings of a retirement account.

Because of my physical limitations I have been unable to work at all the last 2 1/2 years.  I waited a full 2 years before applying for benefits because I kept hoping I would get better.  I used up what little bit of savings I had to struggle along financially as well as I could.  I kept trying to do what exercises I was able to when I was able in addition to eating well and eliminating stressors in life hoping to get well enough to work.  It never happened.  I am no more able to work on a consistent daily or weekly basis today than I was 2 1/2 years ago when my physician determined I was unable to work.

I have found myself homeless 3 times.  If not for the kindness of friends and those that care about me I would have had to live on the streets.  I have not been able to spend the time with my family and friends that I used to because I either hurt too much to even want to be around others, or I am too tired, or unable to focus.  I have had to miss out on activities that I used to enjoy because I don’t have the strength to do them. 

I used to be so outgoing.  I used to socialize weekly.  I used to enjoy entertaining. I loved to travel.  Now, I would rather sit in my quiet home alone than be around others because I don’t have to energy to put out for others and I just get so tired.  My only socializing comes from my weekly visit to my support group and spending time with my boyfriend.  Once in a great while I will attend  a function, but it comes with the price of typically ending up completely down for a couple days after I return home.  I have not entertained in my own home but for maybe 1/2 dozen times in over 2 years.  It requires too much planning and effort as well as there have been times I have planned something only to have to cancel it the day of the event because I had an exacerbation of pain that made it impossible to do anything, let alone be a good hostess.  Traveling is only every couple of months and it also comes with the price of typically ending up in bed for a couple days when I return home because my pain increases and I’ve used up all my energy reserves.

I truly believe there are many people who if they had to deal with my pain on a daily basis they would just give up.  I am a very strong person.  I have given birth naturally to 4 babies, two of them at home, with no pain relief.  I broke a bone in my foot and continued to work on it as a pre-loader at UPS as well as doing landscape maintenance for 4 months before finally going to the doctor because my foot hurt.  The bone had been so damaged from my continued use of it that I had to have surgery to have the bone removed.  I have a very high pain tolerance as well as work at having the most positive attitude I can in my circumstances.  Some days I do get depressed, but most the time I try to view the glass 1/2 full!  I am only able to get through this struggle with pain with the support and encouragement of my closest friends and my support group.  If not for them and my own internal belief that life is always worth living…I would have given up some time ago. 

I am tired of being in pain.  I am tired of being unable to get medical care.  Without insurance or income it has been nearly impossible to get any help for my conditions.  This last year, after I received a small cash settlement, I sought care from a nurse practitioner, a chiropractor, acupuncture and physical rehab, all out of my own pocket.  I have had some temporary relief, but nothing longstanding.  If I were to be granted social security disability I would be able to get more help to get better so I could maybe eventually work part time.  That is my  hope.  But now…I know I can not  work because all of my energy and abilities going to maintaining my simple life and taking care of my basic needs. 

Thank you for your time and consideration in this process.  It has been a challenging endeavor for me.  I used to be able to articulate and complete tasks such as this form without any effort.  Now, as I’ve stated before, this has been a great effort of a few weeks of time to complete this the best I could.  I hope I have been clear.]

I typed my responses to the questions asked on the form.  It was typed and single spaced except for a space between questions and answers.  When all was done, it was 10 pages long.  The process of contemplating all my limitations as well as the changes my conditions have brought upon my life were at times very depressing.  Most of the time I really try to focus on what I can do and have gratitude in my life.  Yet having to realistically and honestly look at all I’ve had to give up…well…it just is so sad. 

In other times during my life when I have had to recount difficulties to another I would just roll it all off and be done with it.  I remember after nearly 2 hours time in giving my life history to a psychiatrist, when I was done he looked at me and said, “You have had a life full of much trauma and many losses and yet you tell it like it is just a story out of a book you read.  Does it not bother  you?  Are you aware that you have endured much?”  Well, of course it has been upsetting to live through some of what I have, but it’s my life.  It’s the only one I have had.   Getting my panties all bunched up over it doesn’t change it.  That was my attitude going into this dissertation of my health conditions and how they’ve changed my life.  Yet it is different now.  In the 18 years since that visit with a mental health professional I have done much work on myself.  I have learned to allow myself my emotions and feelings.  I am able to look at myself and realize not everyone has endured these difficulties.  

It took me being out of work for 2 years to finally accept that I wasn’t going to be able to work.  I kept hoping I would get better.  I kept hoping it was “all in my head”, like some people think it is.  I kept hoping if I would dig deep I could PUSH through the pain like I have so many times in life and just do it…work…live…get past it.  But I couldn’t.  My pain is real.  I do have limitations that not everyone else does.  And no matter how much I may WANT to work, I simply can not work.  So now that I’ve written it all out and really looked at what I have had to give up, I will allow myself some time to grieve. 

I will grieve that I didn’t realize how amazing my body was and how strong I was.  I will grieve that I spent so much time working so very hard trying to gain approval from others in my life, that I missed out on doing many things that I wanted to do.  I will grieve that I didn’t work smarter rather than harder.  Yes…I will grieve….and then I will move on.  I will accept those things I cannot change and find courage to change the things I can.  I will be grateful for the life I have been given and live it as fully as I am able.  I will live today the best I can!