Our Thoughts

Our thoughts. They don’t choose us. We choose them.

Living with chronic illnesses and the secondary depression and anxiety disorders that came along with, I’ve often been caught up in my thoughts, emotions.

Today is a day that if I’m not mindful and aware that I could end up caught in one of those emotional traps.

Physical pain is debilitating. The inability to stand from a seated position without severity is overwhelming. I need my legs and feet to lift my back and I need my back to get to my feet.

Negative thoughts try to take advantage of my well-being.

I’m not trying hard enough, I’m not doing enough, I’m a failure. Guilt.

As I said, “try”. They are trying to, but I cannot allow them to. I’m in control.

It’s not true. I’m neither of those. The devil is a lie.

I couldn’t make our dinner yesterday, my husband did it for us.

Today is worse than yesterday. I don’t want him to go to work each day and then come home and feed us. It’s the one thing I do regularly. We don’t do take out, perhaps twice a year at best,, nearly everything here has to be prepared, cooked and served. That keeps me busy.

Did I mention my best friend? The Crockpot?

I got our food into the crockpot earlier. My main goal achieved. If I’m not able to serve it this evening, at least it’ll be ready for my husband to plate.

Team work! Attitude of gratitude.

When a negative thought sneaks in, I immediately replace it with a good one. This doesn’t do anything to relieve the physical, yet it does help to not fall into a major depressive episode and steer clear of suicidal ideation. So far, so good.

It’s a way for me to get by.

Stronger Than Pain

https://www.facebook.com/strongerthanpain

Into The New Year

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.

I am.

Into the new year…

The Other Side of Pain

sad_facw_behind_a_smiling_face_by_mudabbirali-resizedI’m a confused person at this point in my life and it’s my journey to unravel. Some may think admitting openly to alcohol misuse is something I should have kept to myself. I don’t think so. I think it gave me the opportunity to understand those who’ve self medicated with anything. I didn’t drink everyday, I wasn’t a social drinker, or a party person. My actions of misuse were perhaps a half dozen times ever. What’s the difference between getting drunk, drinking on a regular basis, and misuse? I think the difference is I knew better. I knew better at the time I poured it. Maybe similar to those who misuse RX’s knew better at the time they took them. The ability to know better ends or decreases once altered. I had learned by the 2nd or 3rd time that I shouldn’t drink depressed. I opted to drink the one I shouldn’t have had. You know the one we shouldn’t have, that next one? While I have no personal experience with opioid misuse or addiction I think I know why people do that. At least I hope I do so that maybe I can go on one day to help them, too. Help the families recognize there’s a problem, or that the potential for one can arise. It only takes a few extra pills or that extra shot of booze to change us. There isn’t any excuse. There are reasons. I do have experience with a fatal heroin overdose who was my husbands step sister. We disconnected her from life support.

5 years ago I was so afraid for my husband after his quadruple bypass heart surgery which was after 2 prior heat attacks that I probably nagged him more than his physicians did in reminding him to care for himself better. He became so lost in his pain, the various diagnosis’, emotions and depression as well that after awhile there wasn’t anything left I could do for him. He had to do it himself. Last month the 3rd heart attack happened. Through all this and other events, I began to decline mentally. Physically I could barely make it around the house. I just didn’t want to care for awhile. I’m someone that cares too deeply and I give everything and often to my own detriment.

I’m not ashamed of my actions, but I’m sorry for them.

As previously mentioned I’ve busted my butt this year changing my pain to manageable pain for myself in all the pain related diagnosis’ I have. I’ve worked on myself emotionally, but that can still be wishy washy at times.  I see things differently than I did before and I see them from the perspective of people needing to do more for themselves.

Did you do the followup home PT your physical therapist suggested? Nope. Do any of the exercises and movements on the how-to sheets of paper you were sent home with? You know the ones that even have the pictures outlined on them? Nope. Hardly anyone does and they should be done daily. Are you doing what your physician told you to? Remove or reduce inflammatory foods for chronic pain syndrome? Nope. For Diabetes reduce sugar intake? Nope. For coronary heart disease reduce cholesterol? Nope.

What the hell does anyone want then? For someone else to do it for them?

I have his dinner ready each work night when he gets home at 11:00 p.m. Last night I was exhausted and was asleep by 11:20 p.m. Slept 4 hours and here I am. I provide him home cooked balanced meals, I even spend days making food in batches so that I can freeze it for easy dinners later. Heat and serve. I do this so I can have lighter days and keep myself from flaring. I can’t control anything I don’t make and I can’t do anything about his pain either. He has to

There’s so many people doing the same thing or rather not doing. Like everyone else he’s an amazing person, too.

The help people need the most can really only be found within themselves.

I went to Church yesterday morning. It’s where I’m at most peace. I stood for all our songs. 3 in the beginning of service and 1 at the end of it  I’m really sore, but I won’t call it pain for myself. If I get stuck on the thought of pain because of pain then it will escalate and I know this.

He’s finally pushing through more for himself now because he realizes he’s not going to get another chance. Will it be enough? I don’t know and it scares the shit out of me.

I’m severely afraid to lose him. I already was and now I am even more all over again. I’ve been his since I was 17.

What happens to us as people? Do we lose faith in ourselves? (Not a religious statement). Do we expect other’s to make our differences for us? Of course most do. At what point do we finally decide it’s up to us? When there’s no options left?

I can never reach a 9/10 again. Ever! I’m responsible for me. I roll my ball all over my body to promote blood flow, reduce inflammation, swelling, help my internal organs and structures not break down further. I stretch, and sometimes I still have to move my toes and fingers manually.

Should I be in mental health services? Probably. I was directly after my breakdown as a condition of my release. It was short term and expired. I tried again and it didn’t work out. I’m not suicidal and I look for things to laugh at or with and smile at each day over something. Painting, drum box, things that doesn’t matter if I’m any good at as long as it’s something I’m doing. Remembering all the good things above any type of painful ones helps keep pain from rising. There’s a calm in the happy place. I realize sometimes I do this simultaneously, the good and the bad. Working on that, too. I do have much to look forward to and I’m grateful for so many things and people in life.

I have to minimize my triggers, stressors, my anxiety highs and I do get triggered randomly. Not anyone’s fault. It’s mine. Before I say anything I wouldn’t otherwise say before the trigger, I need to click the X in the top right corner of my screen and log off. I have the mindfulness to know these things I just need to do better to implement them.

I had only been getting on for about 30 minutes between 1 and 2 p.m. and again about 8 p.m. after my nap and was entirely off every few days, but the last few days, off and on even more. It can get lonely with just me, myself, and I all day.  I’ll have to suck that one up too.

Valerian Root is helpful for sleep support and can provide an element of pain relief. I hope it can help some of you who didn’t know of it’s uses. If you’re on medications make sure there wouldn’t be any adverse affects.

It might take me another entire year in healing forward. I suppose a year isn’t that long. It may also be a lifelong ongoing process. I hope not. That might be a really long time. lol

It’s exhausting just thinking about that. Ha!

I do love you all. I can’t help you in your physical pain, eventually I’ll try to with how-to videos, but I’m already on the path to help in the psychological aspects that are even more important.

Goodnight again for now.

 

The Simpler Things

My aspirations are much simpler now. They include living each day however I might in a different mindset that I had previously. If I hadn’t gone through all that I have, especially the last 3 years and definitely since February of 2016 I most likely would still be thinking as I did then and doing as I did then. I most likely wouldn’t have even found a way to go on, yet I have.

images - beach

 

I might have stayed depressed waiting and wondering why or if ever I would feel okay enough in body again. That’s heavy. Don’t we all feel that way? Or most of us?

I use to think that physicians were suppose to help us. I don’t even believe that anymore. I know sometimes people expect me to choose one side or another of something. I don’t choose like that.

Perhaps some of it , my lack of forming words or expressing myself correctly enough to others is from abrupt discontinuation of medications so many times, or the TBI’s I’ve had or my Cerebral Palsy is catching up to me a little more, or the mental break downs as a result of unmanageable physical pain. You know brain fried?

Or just believing that I’m responsible for me above anyone or anything else.

Maybe. Or maybe I do express myself well enough and it’s just perception. Some people can’t wait to be offended. I suppose it’s easy enough to just ask for clarification, but the human emotion rather feel slighted so they have something to fight for or against.

I didn’t even use to be a TV person. Not like I am now. I enjoy watching a Series. I had pretty much given up writing, 100’s of poems and lyrics over the years. I couldn’t squeeze in joy for myself. I’ve taken up painting. I can’t stroke right, or brush evenly, I don’t have enough feeling in my thumb, forefinger, and my middle of finger of that same hand locks from curving. I can barely feel one side of that arm up to my elbow. I still use that hand. I’m ambidextrous which has helped me greatly.

I enjoy making my husbands food even if it takes me all day. A couple of days ago I was cutting an onion and sliced the palm of my left hand. On Thanksgiving it did the same thing to tip of my finger. I have choices. Stop using these hands to prevent accidents or keep using them. I need to use them. My legs ache often, my CRPS type 2 is so so right now only because of the colder weather but I move my legs everyday, ankle raises, knee raises, back movement, arms. I don’t have full body CRPS, I do have full body various other diagnosis’ including both my lumbar and cervical spine.  If I didn’t stretch, my flesh would constrict against my bones and my pain would be escalated.

I was barely 33 when my life stopped as a result of CRPS. Or is that I let my life stop because of it. I’m still thinking about that.

I’m a caregiver to my husband who also isn’t well. My son is a caregiver to me as needed. He was at the hospital for me, us, during his dads last heart attack last month. He advocated for us with physicians, he stayed in front of me so I could drive the car home from the ER parking hot safely as his dad was being transported from the first hospital to another.

I’m in the process of becoming a member at the Church our son was baptized at years ago. I’m a baptized Lutheran. My goal is to be baptized again by submersion as a local yet Southern Baptist. I miss attending at times and that’s a set back for me. Or is it still progress? My Narcolepsy is worse against right now but I set the cell alarm to vibrate to wake me or keep me from the dozes. I really am learning to manage my own life.

Today I have chicken breasts in the crock pot with a buffalo sauce. It’ll be ready by the time my husband gets home from work tonight about 11:00 p.m.

Not this Saturday but the next we’re going to our local swap meet outside auction, I don’t get out much still relying on someone else to get me anywhere. Over the summer I had myself on a great schedule. Up early, in bed early, but I’ve altered my routines to his schedule. I get a nap each evening between 5:50 and 6:30 p.m. About 7 p.m I make an espresso.

I can’t be amidst pain all day long so I’ve minimized my internet time again. Feeling other people too much only sets pain into my own body.

Heck, maybe I really shouldn’t be on the internet at all. Anything that can get in the way, will. Ha! I have no working computer again and did try to restore my laptop it didn’t work. My husband tried a few days ago too. Nope. One more option and that is to buy an encasing pull the hard drive, enclose it, and go from there.

The one I speak of above hasn’t worked since summer time. I was using my really old back up one, the one that barely did anything because of such an old version of windows but… my dog rushed through the side table, tangled in the cord and to the ground it went before I could catch it from making contact.

Actually, I do have a working comp it’s just not mine, but am grateful to use it.

Is there even such a thing as bad luck? I’m not even sure about that one anymore. Randomness.

I was filling out an application the other night and the entire page went down during it. Maybe that wasn’t meant to be either yet I could change it by doing so again. Nah.

My aspiration is to live.

My crock pot is my best friend and my home made cafe mocha makes me smile.

I wish you smiles today!

Blessings

I’ve had a lingering cold going on for a few weeks. Most days not so bad. And then a couple of days ago, wham! Yesterday was so bad. Every ache in my body reminded me of this time last year and I really had to put those thoughts away. I couldn’t let coming off Cymbalta instigate depressive moments and I still wasn’t going to turn back to it just to feel better. I asked my husband if he could stop and get me some Chamomile, Peppermint, lemon and honey on the way back from our daughters. Drank that all day. Coughing, or sudden movement causes a reaction in my right upper side. I kept telling myself it’s just pain, you already know that pain, but I didn’t want to know it, not again, and I started to not be able to handle it. So I asked if they could go get me some therma heat patches. Got that on and went to bed. Each time I moved my back, FML, my arm wouldn’t settle down, moving my neck tore through my shoulder, my fingers were pulsating and going numb before repeating the same sensations over and over. Now what? Took the pillows out from under my head and tried to position my spine enough to relieve all that pressure. Got my arm above my head, left it there, and finally fell asleep.

But then the heat patch activated and I woke up drenched hours later Ha! Slept until after noon time today and haven’t done that but a few times the last 6 months.

Today is still rough, swollen and omg all over, but am managing.

There isn’t anything disheartening in this. Since I’ve been able to maintain my legs enough by stretching and strengthening and other than being sore they’re doing great. I got through a horrible night that last year, too many of them, I couldn’t make it through.

These my friends are blessings.

blessing-clipart-god-s-blessings-clipart-1

2.5

Not using home access for the internet for a couple of months now has been interesting since everything is social media and email, anymore. Web based. I have quite a few articles/essays/pieces to share, but I’ll wait to post them for now. I’ll probably only ever get 3 of a dozen or so up anyway. They were written offline as ability permitted. I generally don’t open the laptop at home.

I’ve been doing Bowen Therapy, each Monday, for about 4 weeks now. Also known as the Bowen Technique. I’ve done this before, but not to this extent. I’ve also been having  LLLT at the same time. For more information on Low Level Light Therapy, you can also refer to NCBI or using the search terms. Having done a clinical trial for LLLT in 2011, I’ve been privileged to be able to have this treatment on several occasions since.

Since I’ve been off those 3 medications in their entirety, I’ve lost nearly 35 pounds in 10 weeks. That time  line also coincides with that thing I did, and a second attempt which I’ll keep right there at this time. Last week, after, I received my certification to help down the anxiety highs. Holistically legal. An option I didn’t want to choose for myself, but one I had to make in order to prevent the 3rd time which could be the charm.

I can feel some change in soft tissue damage and related areas in my upper extremities. I can feel a decrease in some symptoms at my hips down to my feet. (Also the covered areas by my SCS, Spinal Cord Stimulator). Headaches, less intense. No matter what level of decrease I get non weight bearing, the moment I step is the rise. I incorporate dance with Yoga though it’s only upper body and sitting. I only do 4 Yoga poses. I’ve done this for years, off and on, but using it as a tool again, 3 times a day.

Really it’s all about finding my center, again. Solar Plexus, Celiac is in bad shape. I knew that before a few tests last week before therapy. Oh it’s a little about Chakras, aligning grounding etc and a bit about the physical reality of the bodily damage itself. The life force. The breath. Chi, Zen and the ‘I’ll heal me, mentality” because  I know no one else can. That includes the medical profession. Besides they are just a tool, too. And one tool that like us, sometimes needs to be replaced.

I’m hyper sensitive. Not be be confused with hyper sensitivity as a medical term. Few would ever know it, yet I don’t just feel, I feel you and me. I don’t just carry emotion, but I carry your emotion. I don’t just feel pain, but I feel yours, as well. I have to shake that off, somehow and I don’t think it’s possible even in possibility without pretending, or lying to myself that I’m not feeling it. Takes us right back to mental health doesn’t it? Fake it to make it until we break it, or rather, ourselves. Every physical and emotional pain learns a coping strategy. Even a crying baby will learn to cope. .. eventually. It’s all in the mind. Our brains can’t feel pain. The only area that does feel are receptors encompassing outside the brain.

At first I thought I don’t want to lose my mind, I haven’t, I’m not crazy, but know what? Yes I do! I want to lose it. All of it. Let it all just roll out from the bottom of my feet and go away.

Things are still ongoing for now. Appointment and blood draws tomorrow. LLLT and Bowen on Monday. I tell you though when life’s harder experiences are constant, you really come out having learned.

Is Ketamine the Next Great Depression Drug? | Al Jazeera America

February 12, 2015 12:00PM ET

In April, a University of Oxford study in the Journal of Psychopharmacology found that approximately a third of patients with treatment-resistant depression saw immediate improvements in their moods. And since 2012, studies from Yale University, Houston’s Baylor College of Medicine and New York’s Mount Sinai School of Medicine found that ketamine is overwhelmingly successful for treatment-resistant patients.

Researchers are the excited about these developments in hopes of combatting the rising number of depression cases nationwide. Almost 7 percent of Americans 18 or older – about 16 million people – suffered at least one major episode of depression in the last year, according to NIMH. The World Health Organization recently found that “depression is the predominant cause of illness and disability” for boys and girls 10 to 19 years old. In the United States, lost productivity and health care expenses from depression cost an estimated $80 billion a year. And those trends are not expected to slow down. National Institutes of Health researchers project depression to be “the second leading cause of disability worldwide and the leading cause of disability in high-income nations, including the United States” within 20 years.

Read the full story here-

via Is Ketamine the Next Great Depression Drug? | Al Jazeera America.

Stress-Related Inflammation May Increase Risk for Depression

Released: 20-Oct-2014 2:05 PM EDT 

“Inflammation is the immune system’s response to infection or disease, and has long been linked to stress. Previous studies have found depression and anxiety to be associated with elevated blood levels of inflammatory molecules and white blood cells after a confirmed diagnosis, but it has been unclear whether greater inflammation was present prior to the onset of disease or whether it is functionally related to depression symptomology.”

Read more-

via Stress-Related Inflammation May Increase Risk for Depression.

BBC News – People asked to blog about their mental health illness

People with mental health conditions such as depression, anxiety or schizophrenia are being asked to write about their lives online.

via BBC News – People asked to blog about their mental health illness.

(Pressed)

Surviving the Fire

One of the hardest parts of living with CRPS is the not knowing. Not knowing when the fire will ease down, or the icy cold to run warm. Not knowing when the ache will settle or quality sleep will come. Not knowing if you’ll doze off, even when everyone else thinks you’re still awake because you appear to be. Not knowing why you’re being sent to a new doctor, or how the bills will get paid. Not knowing how to support your spouse the way you use to because you can’t work anymore.

Feelings of inadequacies and worthlessness often override feelings of joy and hopefulness.

Yet you still smile…  try to make other’s laugh, you laugh yourself.

The title of this blog is just about right for this post. When chronic pain and depression collide we’re left with pain and despair crashing into one another. And a vicious cycle that if we don’t pull ourselves out of either by self or with help will just keep bouncing back and forth. There’s nowhere to go. Chronic pain often causes depression and in turn the depression causes even more pain. Stress will just exasperate the two. What might come of all this? A horrible Flare-up. What can we do? We have to break the cycle. Intervene!

My RSD CRPS fire burns steadily, when I have a Flare-up it becomes a raging inferno, so hot, like a steam burn. There have been times this fire has become visible to the eye. My skin has appeared to burn from the inside out leaving discoloration that very much looks like steam or hot water burns. My bones ache so deeply they are screaming.

An excerpt of an article/essay I first wrote in 2009 (Flare-ups and Flare up Protocol)

“I’ve learned to help myself during these times. Duration, frequency and intensity is something that I have to take control of. We all have to. We truly have to. The tools I use during these times are called my “Flare-up Protocol”. My flare up protocol includes the 3, 20’s.

The 3, 20’s are:

Exercise (ie, Yoga, stretching, walking, if able, light weights, activity, etc)

Modalities (ie, anything that can be placed on the body for pain relief, such as a tens, heat, hands, etc)

Distraction (ie, Memory master system, games, meditation, relaxation, fun, etc.

These can also be considered coping strategies.

My favorite is laughing.

The 3, 20’s mean 20 minutes of exercise, 20 minutes using modalities and 20 minutes of distraction.

These should be done whether or not one is experiencing a flare, but especially during. And up to 3 times a day.

While it’s easier said than done, the worse thing to do for a flare-up is to do nothing at all. Bringing us back to the use it or lose it theory which is quite accurate. Doing nothing can cripple us just as much as the pain itself.

I imagine a few of you might be thinking “You’ve got to be kidding me?! You want me to exercise when I’m hurting this bad? You must not understand” Oh but I do, I’ve said it and thought it a hundred times over myself.

While some will not want to take this to heart, we have to take responsibility for our own pain, everyone has to learn to and implement their own Flare-up protocols to get through these extra overwhelming, overbearing, debilitating flares.

As people we expect our doctors to take our pain away and we become discouraged when there aren’t any answers to satisfy our questions. We become depressed and insecure, yet We have to remember that RSD/CRPS is an incurable illness. Classified incurable because there isn’t a cure to it. There really isn’t anything the doctors can do to fix it. If the injury is correctable, it probably isn’t RSD. Our health care professionals can help us with medications and procedures, and that’s it really… just help us along.

We’re usually directed to pain management when our other doctors are at a loss. Pain management is just that, management. Again, not a cure. An area of practice that helps us manage our pain, not make it disappear. They are intended to help us live some sort of fulfilling life when nothing else can be done. Pain management is usually a last resort and the rest is up to us.

We might not like it but we have to take primary responsibility for managing our own pain because there isn’t enough knowledge or medical and scientific certainties out there to do it for us.

Flare ups are apart of having RSD/CRPS or a chronic pain condition. They’ll never go away, we have to learn to accept this. But, with practice, we can better learn to control them.”

http://crpsadvisory.com/rsdcrps_flareups_and_flareup_protocol.html

There have been many times I have used muscle relaxation, progressive muscle relaxation in place for exercise laying down.  I do simple Yoga stretches. My right calf has had atrophy for 11 years now and continues to worsen. It’s important to help our bodies not waste away. My exercise is also listening to music and moving my body to it the best that I can even while sitting upon my bed.

So how do you survive it? Relax! Try removing worry from your life. Again easier said than done. I know, I continue to struggle with the same issues. The not knowing, the unknown. What will tomorrow bring. For one thing it’s best not to tell ourselves tomorrow will be an awful day. Why? How do we know yet? Tomorrow isn’t here. Positive self talk is helpful. I should practice more of what I preach. Learn how to get Freedom from Pain and Discover Your Body’s Power to Overcome Physical Pain.

I use my imaginary baskets. In my mind I have 3 baskets. 1 for important things, tasks, people, places,  issues, etc, 1 for the moderate and 1 for it can wait a bit.

Everything is important to me. So this is difficult. I care so much about people. I often times care too much which causes me to carry much on my shoulders. I don’t know any other way to be. I serve, I give, I care and I love to.

I have to decide what is most important to put into the important basket. I need to learn to put more in the 3rd basket. By putting everything into my first basket I get behind, my moderate basket rarely has enough in it. I end up in a crash and burn. If it’s used right it really can work. Even with kids.

When we’re happy, everyone around us is happy. We all know that saying.

Deep breathing is helpful, meditation, relaxation, guided imagery, progressive muscle relaxation, distraction, modalities, I’ll leave out exercise 🙂 , support groups, not carrying the world on your shoulders alone, aroma therapy, bubble baths and soothing music, practicing appreciation, being thankful.

I’ve been scheduled to see a Pulmonary Specialist based on my sleep study results. No one has given me any specifics…  “not knowing”. I admit I’m nervous as I don’t know why. All I was told is that it didn’t seem to show Sleep Apnea which I was tested for.

I do know one thing, regardless of how hard it all is..

I am, so far,  surviving the fire…

 

Surviving the Fire by rsdcrpsfire

and I  hope you are too!