“However weak our hearts may be, we are not that weak we cannot stand the pain, and, however strong we may be, we are not so strong that pain can’t touch us!”
IG: Stronger Than Pain
“However weak our hearts may be, we are not that weak we cannot stand the pain, and, however strong we may be, we are not so strong that pain can’t touch us!”
IG: Stronger Than Pain
It’s been about 6 weeks since my husband’s 3rd heart attack. I’m just now bringing myself back up from the worse depressive low in 11 months. It’s been 4 weeks since I deactivated my Facebook. In my emotional despair I moved out of our house and into the 2 room conversion. I would only come inside when he was at work. In the depression, I could only think I had to teach myself to live without him because if I didn’t I would never know how to for myself.
Depression and suicidal ideations often co exist, yet one doesn’t always have to include the other. I wasn’t suicidal, I just couldn’t feel anything but heartache.
I’ve been sick since the 17th and it took its toll on me as well. I can’t risk missing a day of stretching because my body needs it for chronic pain maintenance. My ribs hurt so bad from coughing, I could feel my physical stability decline too.
My Diverticulosis flared into Diverticulitis to the point I had to buy baby butt cream because I was so raw from “those” accidents that simultaneously included the inability to control my bladder it was like a severe diaper rash.
Of course that hasn’t been a pleasant experience and depression worsened. On top of it, I can feel my skeletal frame shifting again, I could barely lift my head due to the pulling in my neck. If I could get my head up high enough I could get moments of relief, but it was difficult to maintain its position. I have a travel pillow that will encircle the neck and button closed. I used it to support my head and neck when sitting and sleeping. I had to sleep laying on my arm behind my back.
I smudged our home and prayed for peace, tranquility, love, light. I prayed for guidance from the angels, healers and teachers. I gave gratitude for my experiences, the good, the bad, and the ugly, so that I might heal and teach others as my journey continues.
Even though my low was unsteady, Today, I praise myself for getting through it by my own self will and the encouragement of a loved one that I would.
Into the new year…
Life is precious no matter whose life it is. I let my pain, our pain, nudge me to one side more than to another. Just like they did. They? I know! We separate ourselves from one another and we shouldn’t.
Opioids, addiction, loss of loved ones in life or death ended up with the development of the CDC Guidelines. The recommendations. This led to the current affairs and even our President declaring an emergency over it. It influenced further lack of care for even compliant pain patients and has caused more suffering.
The many who believed in over prescribing and the opioids being an epidemic couldn’t see or didn’t want to acknowledge that there are other people in the world who would end up losing, too.
By reducing and removing these analgesics without a plan in place to substitute relief the quality of life provided by these medications would lesson and some people would end up choosing suicide, and many would live with the ideations not knowing how to go on.
I suppose in it all our selfishness as human beings to want it our way disregards the need of others who aren’t us.
I’ve been selfish too.
We end up fighting for our causes, creating campaigns, starting movements, staying steadfast in our agendas which are in a sense born of pain in one aspect or other and then we blame each other.
I still believe that we all have choices and that responsibility for those choices should be on ourselves and that we should accept those consequences.
Addiction, any type of, is a mental health issue. I’ve learned that the impulses that drive people to do what they do are no longer their fault once they reach the point of losing clarity. to make proper decisions. I understand better that when the point is reached where the mind has become so weakened by the addiction that the ability to make the better choice for themselves fails to exist.
I had taken this year for me. For my healing. I’m still healing and progressing.
I wish for all of us that the new year gives us all a new chance to heal from our pain whether in body, mind, or spirit and that we can all find peace in pain.
In reference to:
I haven’t written for a minute because I’ve been struggling to maintain a sense of worth and ability while at the same time coming out of the closest remission I’ve ever had. I’ve learned to survive without medication management for pain, yet there are times I wish I had even a 10 count as needed a month of Hydrocodone or Tramadol because it’s hard. I’ve learned and used every natural way I know to help myself.
I know that no physician ever pushed opioids on me and I don’t believe that even though I was dismissed and abandoned that it was personal. I understand they were under stress during that same period of time which just happened to be my worse time.
I never used the 10 on the pain scale in all my years of CRPS or the dozen other pain and non pain related disorders. I reserved that number. When I did use it, when it was 10 it didn’t do me any good because I suppose it’s so overused even the medical community thinks it’s a joke if we do.
The joke was on me.
I spent the summer in a little kiddie pool in order to do weightless movement that I wasn’t physically strong enough for outside of water. It really helped a lot. I’ve had a treadmill for about 10 years, an old model and still in working order. I’ve had a stationary bike for approximately 10 years, the ab slider my son sent over a few months back, my yoga ball while about 4-5 years old I only started using recently.
It’s just the treadmill and yoga ball I’m using now along with some stretches, mindful about posture, I learned with having MLT.
I could suck it up and have the spinal surgery, or I can suck it up and continue to do all I can for me still without any of that. It’s been a great stress reliever to not be having monthly PMD appointments, to not worry about whether or not medications will be delayed or denied, to not wait for a lumbar or cervical pain block, to not have to rely on someone or something for relief.
I’ve managed also to better regulate my high blood pressure often 180/+ to restore internal involvement, level off drastic inflammation and swelling for the most part. Today is a swollen day, symptoms extra present, dreading getting on the treadmill, but I have to even if for only 20 seconds. I’ve not made it beyond a minute even on better days.
I use the chia seeds for their anti inflammatory, anti oxidant, fiber, and other qualities. My allotment of vitamins have ran extremely low, so I’m out of some, and have a bit of others left. The combination was helping me maintain better. I feel like ka ka right now and so I know they provided a benefit. Since it’s expensive to buy so many different kinds I’ll be replacing it with Prenatal vitamins this upcoming week. The prenatal (nope, not pregnant) provides many supplements in one for a single price. That’s my best option until I can replace my others. I use fresh ginger as well.
The chia seeds I use as a sprinkle on foods and in water, coffee. In liquid the seed becomes a gel.
Later I’ll be doing either Facebook or Periscope live to share these natural ways of helping ourselves. Especially for those whose pain relief analgesics have been reduced or stopped and for those interested either way.
Do things happen for a reason? Or are they random? I’d like to believe it’s all been for a reason and that reason being instead of advocating and raising awareness solely for cures and information about an illness to instead raise it for HRQoL, suicide prevention and our mental health that will always go with it.
That’s the purpose of Stronger Than Pain. Helping people live not just share with them all the reasons they never will again but rather all the reasons they can, must, and have to.
Through it all came an undeniable breakthrough.
It’s been a fairly active last couple of weeks. Active for me as I still don’t get out on any kind of daily basis and doing so even a couple of times a week wipes me out. I try to get out as much as I can in order to increase my ability to do so. I do have an appointment with my pulmonary sleep specialist next month to consider changing my sleep disorders medication. I do still use that one. My newer dream machine is helping for the apnea’s again but not in a way that lets me wake up feeling awake and refreshed. They always told me that the machine should provide that. I can see how it’s suppose to as if it assists us to breathe at night then a better quality of sleep should be restored which would mean not as tired. Makes sense. I just don’t feel refreshed in any way. I take the Nuvigil. Actually the generic Armodafinil since it’s now available in that form. The older medication Adderall is what I’m hoping he’ll switch me to even if only for a trial period to test for positive or negative reactions. Nuvigil vs Adderall, The only draw back for me might be an inability to sleep instead because it’s stimulant properties are different from Nuvigil. Nuvigil I can fall asleep on no problem. In other words it doesn’t make me unable to sleep at night. It’s a stimulant but not an amphetamine. It’s fairly short acting and there isn’t any withdrawal when not having it. 2 months ago I was out of it for an entire month and dozed or slept more than anything else.
I’m still working through all the extra issues that complied on me. Fixing each of them the best that I can. If I have no energy and I’m dragging or just want to sleep it’s harder to do my stretches and routines and if I don’t do those my physical self would continue to deteriorate and I can’t let that happen. Right now my limbs are usable, weak, but stable. I have built up a lot of muscle and returned atrophic areas into less waste yet I can’t seem to lose any actual weight which has to happen in order for me to weight bear and increase movement with less effort.
I’m still making more dinners and enjoying doing so, but I prep it earlier in the day in order to cook it when it’s time. In a way it seems like that’s more work when I could just do it all at the same time. It could be too that doing it that way makes me feel like I’m accomplishing more while also minimizing exerting myself all at once.
I colored my hair a week or so ago. I had so much old mixed blondes in it, the natural dark, and yes silver too (getting old ya know) that I put a dark purple on it to make it all closer to one color again. I want to refrost blonde back into it but I don’t even have the energy for that. I know my husband will help me pull the strands through the cap but my energy level is low for that too. I use to keep it all blonde, I dislike my natural very dark hair, but it’s a lot of up keep, so I just pull the streaks through it and leave the rest dark for a couple of years at a time. My mom had 2 frosting kits and sent me home with one of them.
I wanted to find local work but instead I’m reviewing vocational training so that I can attempt to do something else with my life. My memory issues are bothersome and my ability to retain knowledge is slow. In order to do VR I’d have to rely on my husband to get me to and from. I don’t think I could make it/walk it yet to the bus stop each time without having to sit on someone’s lawn or the sidewalk. I’m still working on my own ability to drive again. At one point I was referred to assistive transportation for people with disabilities but I didn’t have the guts to pursue that option even though it’s suppose to help us be more independent. There’s people out in the world that need those services more than I.
I already started laundry, need to replace bedding today, get outside, do some reading, work on my goals but I don’t think any kind of dinner is getting done today. Not unless the sunshine boosts my energy or inspires me to do so. 🙂
My first experience with suicide was when I was barely anything more than a toddler. I can still remember it all so vividly. Wandering an empty house, trying to care for my crying baby sister who was still in a crib. My life as a caregiver began that day. My sister and I are 2 and one half years apart in age.
My mother and father were 10 years apart. To be more specific, 9 and 1 half, the same number of years our son is to his oldest sister and the same amount of time between our son and grandson.
My mom inherited 3 children from my dad. She was 19, him nearly 30. She was suddenly the step mother to children between 6 and 12. My sister and I are her only children with my dad. My mom and dad were married 25 years when he died of cancer.
My dad was a very dominant man who used his hands on her at his will. I wasn’t 16 yet when he was first diagnosed with lung cancer. He had a partial lung removal. When I was 22 it returned with a vengeance. By this time I had been married 4 years and had 2 beautiful daughters. That same year I lost my twins. One ectopic the other was lost during the exploratory laparotomy which would make me never be able to have children again. I would give birth to a son months before my 30th birthday. 3 years later I would have the injury that led to CRPS. 1 year before my injury we lost our rental home and it’s entire contents to a fire. My husband and our son was in that fire. My husband not only threw our little son out the window, but managed to, having already been burned make it to the connecting unit and help them and their baby out of it.
I worked on the main avenue and I heard all the sirens. I remember my heart sinking of fear and then I dismissed it as an overactive imagination. 30 minutes or so later an officer came into my work and asked for me personally. He said “Ma’am you need to come with me now”. I asked “Why?”. He responded “your home is ablaze”. “Where’s my husband, where’s my baby? Tell me their alive. He said “I don’t know”.
I dropped to my knees because I knew I left them sleeping when I went to work. When we arrived 2 blocks were blocked off and I could see the flames raging out what had been my kitchen window into the street. He told me to stay in his car but I couldn’t. I ran toward my house. There were so many people in the streets, fire, rescue, police, even the American Red Cross was on the scene before I was and I don’t think that officer could have gotten me there any quicker. I ran away from him and into chaos. Eventually I seen my husband near an ambulance. His fingers were burned so badly that they looked like freddy krugar knives. Part of his ear was melted off, all facial hair gone. His chest was burned and his feet were bare. His face was burned and blistering, he had severe smoke inhalation. My baby was already en route to the hospital. I’ll never be able to describe that emotion. My husband was taken after I got to him. My son went out the window in a diaper, my husband was in his underwear.
The red cross put us up in a motel after assessing all that it was. It was all gone. We still had our jobs. My husband never took disability for that event instead he used his accumulated sick leave and vacation. I walked to work for weeks. Between the fire and the fear I reduced my weekly work hours to be with my children and as a result when I became injured it would alter compensation for the next chapters of my life. While my WC disability rating is above 70 percent I would go on to received $76.04 a month. Less than the minimum under the state. I would receive only “wages” instead. Had I not lessened my work hours the quarter before, my lifetime stipend would have been considerably more.
My career prior to this job was high management. Restaurant Management. I took that job at the time so that I could be farmer’s little duck without any title or responsibility other than my own cashier position. I was the manager on duty the night of my injury. I wasn’t a manager. What I was is someone often used for another persons gain. Someone who would give, and then give some more. Sort of like the last 16 years of CRPS as well.
Within a couple of years of that first suicide experience I was molested for the first time. That would continue for another 2 years at least and because I was the oldest of my sister and I, I would end up taking the brunt of it for her.
I learned really young to hold it. I learned so well that by the time unrelenting physical pain came I couldn’t show it enough. Not out in the world. Only online. Only in words.
Facebook is one of my flaws because it becomes too easy to say too much even if the intention is well.
My birth daddy, no matter how hard would lead me into never being able to speak up for myself. He didn’t allow me to complain or not feel well. Just like my mama. My mama never had a voice, couldn’t laugh or play. She couldn’t have friends and she couldn’t want to be around her own family. Even when she went to real-estate school she was accused of doing something wrong. I would end up submissive and someone who could only give, but never receive. That man did me right even so. I would be the one to close his eyes when he died. I would be the one to pry his hands off the hospital bed railing that he must have grabbed onto as he was taking his last breaths. I would be the one to wake my mom when it was over. My dad died in the home of my husband and I are our 2 little daughters.
I would end up someone who would give everything above herself. I would end up being someone who could hold intense pain so well that not even a professional could recognize it without diagnostic proof enough to believe.
I would end up losing another child after the same injury that led to RSD/CRPS, one I never thought could be possible because I was told it wasn’t possible. I would lose that baby because of consequences directly related to it. I have finally let that go to the extent that I carried it just this year.
December of 2012 my husband had a quadruple bypass. He had his first heart attack at 37. 2 stents were placed in his heart. He had another heart attack within a couple of years. He was diagnosed with Diabetes during the first. I never left the hospital and because I couldn’t drive, I slept outside in the van in a really hard winter.
Less than a year before that our son had a Traumatic Brain Injury. He was intubated, and in a coma. He sustained a severe trauma to his frontal lobe in addition to other areas of his brain. I never left the hospital for that 11 days either. When he was 17 and his back was being evaluated due to the head injury we learned from Shriners Hospital that he was born with birth defects of his spine. I’m grateful that the doctor never told me he was in trauma as I gave birth to him because the cord was wrapped entirely around his neck and his body. The doctor literally spun him out of me. I gave birth to Ozra entirely natural. Had I known, my body may have reacted in fear and inadvertently caused his death.
In 2013, our oldest daughter would be diagnosed with a rare liver disease called EHE. She’s been on the liver transplant list. I wanted to be a living donor for her but because I had part of my liver removed just months before, and because I also have lesions on my liver in other areas, and because the vessels in mine are adverse, I haven’t been able to go forward. If I die, my child will have my liver. It’s still good enough for someone who needs one. It’s not good enough while I’m living.
My daughter Rikki has served in the U.S. Army. She would have been deployed to Afghanistan with a rifle in her hands. A military training session would bring her back home. She’s never sought disability compensation. The incident to be clear was not her fault she was just someone receiving the worse of it.
Our children are 29, 28 and 20.
I would be fine through it all. I would fake it to make it. I would compartmentalize all of the before in order to survive CRPS and coexisting diagnosis’ and developments. . Until physical pain reached a level I couldn’t breathe through, think through, or feel anything else through. I had fell into the CDC Guidelines being created and implemented, the physicians who became afraid to prescribe or consider us as anything more than the less than that we became. I would be fired from pain management of 12 years 6 days after that first suicide attempt.
The first time I attempted suicide on Valentine’s Day of 2016 I was 11 days off medications. Medications I had appealed, won, yet never received. I wanted to be happy I survived. I wasn’t. The second time April 19th of 2016, I’ll never know how I survived that one. The 3rd time, January of 2017, I understood after that I’m not obligated to anyone. I’m not responsible for anyone other than mine. I don’t owe anyone anything that I didn’t return mutually already.
I know what I’m indebted to and it sure isn’t anyone here.
I love my mama who I’ve only seen but a few times in 20 years, and I love both of my fathers equally because one gave me my first 22 years of life and the other has been for this rest of it. But most of all my dad now has given my mom everything my dad couldn’t give her. A life without being hit, belittled, or scorned. My dad suffered from his own mental health dilemma’s because he was cheated on in his first marriage. He believed my mom wouldn’t ever be faithful. She was and she is.
I would end up someone who wouldn’t take any kind of ka ka from anyone, anymore.
Even at my weakest points, I’ll always survive you.
My mom and dad arrived in Sacramento June 28th and headed to Southern California on July 1st. Today I’ll see them once more before they leave back to Quincy and then drive back to Georgia.
They came so that my dad could see his brother and make funeral arrangements for him due to inoperable end stage cancer. My dad also has cancer and my mom has a pacemaker keeping her heart beating.
They took my sister and her friend to Disneyland this last week as she had never been there before. My little sister was born my niece, but my parents have raised her since she was a baby and so I acknowledge her as my sister instead.
This visit was the first time in all my 16 years that I was able to be with them without taking naps, or laying down. Without being overwhelmed by pain or in a mindset of pain. I even swam a few laps for the first time in all those years. My arms and legs did fairly well, my lower spine ended up flaring a little afterward and that might be because of the prior week and having started more aggressive movements and stretches for my back in my little pool.
I might not be able to do the things I still have wishes for, but I know that everything I’m doing is keeping my blood flowing better throughout my extremities, and I know that each stretch is keeping my flesh circulating with less tissue restriction and edema and therefore keeping pain from reaching an uncontrollable point.
For certain my orthotics also make an incredible difference because when I don’t wear them my entire physical alignment is disturbed and I end up leaning forward just to be up after standing. Having flat feet never did me any justice.
My family will be arriving back in Sacramento in a couple of hours and then I’ll be spending the remainder of the day with them before saying G’bye for now this evening.
Heading out to my kiddie pool to get an hour in before meeting them.
Love ‘n light.
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