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Going Back and Moving Forward

I've been feeling overly vulnerable. I feel weak to admit that I think I'm afraid of the change about to come. Crossing over from what lifes been for me to new opportunities. Hanging on to faith and hope. Pretending that I'm well enough to survive, but also knowing it's really hard to live. It's hard to hang on. Everyone tells me I'm so strong, my strength gives them strength and I'm glad it does. I really am. That's what I want is for others to have strength and survive pain, but I'm really not that strong. Even when I show my own pain, I'm still the strong one.

I remember back in 1991, when my dad was diagnosed with inoperable lung cancer. My dad and mom were managing a motel on the Esplanade in Chico CA. One day my dads leg gave out on him, he was taken to the hospital, my brother-in-law at the time and my mom tried to carry him in because only one leg was working, he was admitted, by that evening the other leg was paralyzed, by the next morning he was paralyzed from the waist down. They tattooed him to begin radiation, but then it was determined radiated would not make a difference. They gave him only days to live.

I was only 22. I listened as family members offered to take him home. He declined. I did also, I begged this man that raised me, molded me, to let me take him home and care for him.

My Master told him he would not be any burden at all. The nurse came in to change dads bedding, I had to step back as the curtain was closed. I listened and cried my eyes out quitely as my Dad told my husband to take care of me, he praised me, saying that of his 5 children, I was the only one that really got it, really understood it. He was talking about nature, he was talking about life itself. My husband promised that he would. I remember my dad saying... "you better". And I thought how would he know? He was dying. How would he know I would be taken care of. How...

My husband was not the man originally chosen for me. My husband had the guts to stand up as a man so young and take me as his own. He took me from two men, one was my father.

That's how my dad knew in that hospital bed 5 years after my husband took me that he was a man of his word. He is still that same man of his word.

When the curtain was reopened, I tried to hold back the tears. I didn't let another drop. I always held my pain inside regardless what kind. My dad told me yes.. he would come home with me. He told me there was no place he'd rather be in his last days. Oh god how I wanted to cry, instead I smiled.

He was transported by ambulance from Chico CA to my husbands home in West Sac. Hospice had already came in and set up a hospital bed, a latrine, a hoist so dad could use his arms to pull himself up to a sitting position. I fed him, I changed his diapers, the bed sores were so bad, finally dad suspended any shame, as I had to clean his bottom which was so raw as I wiped gently his skin would fall off onto the cloth.

My husband let the home be an open door, for any family to come and go as needed to visit dad.

The hospice nurse would come to change his bolus line. He could disperse morphine to himself by pushing a button and be able to have a booster as needed. He stopped eating.
I would give him popsicles. His tongue was raw with sores. My mom lived with us also. She helped, but I was caring for the both of them. For my little sister who's 2.5 years younger.
I remember how they took Xanax right and left.

But I was the strong one.

I watched his stomach constantly as I sat in the kitchen at my writing table. I had a solid view to the living room, I was never far away. I would fall asleep there, awake there.

The night before he died, he pushed my husband and I to go out. I think he tried to pass on while we were away. He kept dozing off the days prior and awaking to saying things like Cy can't believe any of this, Cy is short for his own dad who passed on a year prior. Do I believe there is a light and the possibility of seeing passed loved ones prior to ones own passing? Yes, I do. I've seen it. Listened to it. Some might say family was just on his mind. I would say differently.

When I walked up to his bedside right before going out... he said to me "you look beautiful, melody". I'm not Melody, my mom is. I think he was seeing me as her years prior. I got very drunk at the bar that night, my husband was playing dice against the bartender and winning and I drank the winning drinks. I tried to let go. I was hurting too.

I checked dad upon returning, mom was asleep beside him on the couch. We went to bed. My husband left for work in the early A.M. I got up to check dad again. He was sleeping.

Soon after, peanut (erykah) came in, pulling on me, she was only 2, I woke up and put her back in their room, button (kharisma) was awake too. I started to go back to our room. My heart sunk, I turned back down the hall and back to dad.

His hands were gripping the side of the bed, I had the bars up so he wouldn't fall out of bed. His stomach wasn't moving. I froze for a moment. I knew. I remember holding my breath, I whispered something in his ear (yes I remember what it was) I pulled his hands undone from the bed posts. The grip was so tight. I crossed his arms around his chest, I was laying him to rest. I was accused of killing him by his mother and sister. Perhaps others thought the same... but..

He was a no code. He commanded me that if he started to pass to let him go. This was the man that raised me. The master of all that was his. I remember telling him daddy, I can't do it. I can't not call 911, I can't not save you. When he said to me, "do I have to tell you again", I said no and I promised.

I promised.

And I let him go.

I woke mom up, when she looked me in the eyes she knew. She tried to shake him awake, when the coroner got there, she was in the bed laying next to him. I called my husband.
The home became chaotic. My husband took over, his own dad came. They did something for me a week prior. They made funeral arrangements. I loved my father in law. He was a good man. They contacted veterans affairs and the VFW. My dad had a military funeral with a 21 gun salute. All this for me. And my mom too.

I left acting and modeling school to take care of my dad. I did later return and graduate with an agent. I had to give it up because I had to take care of my mom.

My father in law passed away 10 months later and my mother in law a year after.

I did go on to become poster girl at a local 50's diner and do their commerical. I was always a valuabe asset at work. The two same jobs competed for me back and forth for years. I worked for Eppies Restaurant 4 times and Hueys Diner 3. For a period of time both jobs at the same time. From a regular employee to assistant and General Manager. I went to the top at Hueys. I couldn't go any higher. I'm proud of that. I did all that by the time I was 25. I took care of the man, the children, the home and still had time for a social life.

One day I called home from work to tell him I would be home in a half hour, I needed to stop at the store on the way home. Well.. I stopped at the bar, we were both well known there. Live music was playing, I danced maybe 3 minutes, I slammed a drink from a man I knew well and strictly platonic. I left the bar, went to the store across the street and went right home. When I got home, I was a little late. Not much at all. Well.. my Master checked the register receipt from the store. Busted!

But I never knew that 7 years later it would all come crashing down.

For 8 years it has been nearly nothing but doctors, surgeries, seclusion. I did go to Vocational Rehab in 2005, took a leave for a surgery, returned, completed my pre requisite classes for my major and left because my body kept deteriorating. It became to hard to sit or stand. It just all became so overwhelming. I began to home school. Between the constant pain and medications, my mind is not what it was. Growing up in the MGM program (Mentally Gifted Minds) didn't do me any good anymore. I had began to turn all my focus on RSD/CRPS research by 2004. By 2005, I had a website up and was in communication with organizations of same. I kept researching, looking for clinical trials.
Because Workers Compensation denied treatment other than pain management and medications for so long by the time I got it... it was too late. An irreversable stage.

I suppose I've pretended in a sense that it's incurable. I can go on without that in my head. I have other diagnosis' that I don't even think about. If I don't then I can push the symptoms away. If it's not in mind then I don't have to worry about it. When I have spoken of it... some people assume pity... they couldn't be more wrong.

And then I become a group leader. An acheivement, yes. I've yet to speak with the Senior Leader who's on vacation at the time to let him know I either have to back down as leader or commit to only a half hour a day and on week ends a hour a day. I think I can get all that need to be done..done , in that amount of time.

My team of doctors are really taking over now. I wish I had this when I begged for it 5 years ago. I'm not ashamed to say that I went to a Psychologist and a Psychiatrist and in my intake paperwork I specifically listed that I needed to learn to cope with physical pain.
Instead of helping me they tossed yet another diagnosis on me and gave me Depakote at 2,500mgs a day and Wellbutrin at 400mgs a day. Without going into further details.. after a few visits over a period of time, I never returned. And quit those meds cold turkey. To give some a time line, I was a member of GCI. I left the meds and GCI behind at the same time.

I became absorbed in promoting pain related websites, advertising... and seemingly endless research.

A program finally came along to help people like me get back to some type of normalcy.
To live some type of decent and fullfilling life. My foots already in the door, I've yet to begin the program itself, as of now, I've gone through the meetings to get there.

I think I'm afraid of change now. At the same time I'm excited. To have a life again outside of the home, even in it, but being able to do things? I can't let that pass me by.

I want to be a success story.

I use to be a perfectionist, I can't have that anymore and I'm not quite sure how to fail. Being secluded and home bound prevents me from failing. I just am.

I never missed work. There were periods of times when I was in Management that I went 4 months without a single day off. A few half days, but not a day off. They were severely short handed and me... it was always so hard to say no. Being a natural submissive can sometimes put one in positions they can't get out of and it did.

I keep thinking about school, I have 3 courses left for my diploma. Courses that years back would have been easy for me, maybe with some difficult parts, but I could have finished this on time years ago. Adobe Indesign an amazing publishing program, Adobe Photoshop and Adobe Illustrator. It's not just running the progam and using what you need. Heck, I've used these programs, but not to the extent needed for a diploma. Making Master templates, Book designs, custom illustrations. Ugh... it's just harder for me now. It just is. I was hand coding html 12 years ago. Hand coding all of it. I only learned to used a template a few years ago and it drove me nuts. Now it's easy to "use" a template, but not create a master one. Making a book to where the pages turn, not click to the next. This is what I have to do and so much more to graduate. I made a webpage with Microsoft Word. Most people only use it to write with. There's so much more to these programs that's what's on the surface.

I've done so much in my life in during the gloomiest of days.. it scares to me to think about when it's going to run out.

I think of my dad and what happened to his legs and I think of me... and I can feel it.
I tend to believe some of us are here to walk the shoes of everyone. I've walked many.

Our house hold is both black and white, I'm not talking about theories or philosophy, I'm speaking in the literal term. I am not shamed. I would feel shamed for the person who didn't like it. While some may pity me for being open, I would pity them for being closed.

Of course there are a few things I've probably never mentioned, but they surely aren't secrets. Actually I've probably mentioned everything at some point or other over the years. In articles, essays, forums, etc.

Anyway...

It's hard to move forward when you've forgotten how to...

Until next time...

Reflections

Haven't written in a few days and have had a lot on my mind. For one, I just can't seem to shake the pain that invades my body everyday. The last 2 days have been rough. It seems like it's just one flare-up right into the next. My knees feel twisted, my calf is constantly on fire, meds hardly help, so I end up putting myself to sleep with Tylenol PM just so that I won't feel as much pain in my sleep. And hardly any until I awake for some reason.

I started treating my face with a series of lotions and my face is smooth and soft again. Even lines that started to appear are gone. Almost like a glow a woman gets when she's pregnant. I'm not pregnant though. Nope, nope, nope. That's a done deal.

Today I meet with the team of doctors at Compass to determine a plan of rehabilitation for me. Rehabilitation isn't really the right word, I can't think of the word the assistant said to me on the phone, but it's setting up a plan of action to help me achieve some goals either way. Obviously I have been cleared as a candidate for this program.

One I know they're going to help me try to wear shoes again. I haven't wore any aside from hard rains for 8 years and I don't often go out in the rain, only if I have an appointment to go to. We're going to start turning my stim (SCS) off at night, I can't quite recall what else, but today I will learn what we're going to do for sure. While I'll more than likely be sharing with others what I learn as I go in this program, later, I'll be compiling a paper of teaching.

I've been keeping busy Leading the pain group and doing well.

I've been thinking about God and the bigger picture. Receiving at least a dozen of private emails a day asking me to pray for them in their darkest hours of pain. I always do. I've been called an inspiration so many times in open forum and privately. How can this not make me feel good? It does. It always does.

There's a Neurotropin study in Clinical Trial and still recruiting patients for CRPS type 2. Unfortunately the study is too far away for me to particape in.

Something came up in the group that really got me thinking.. One person said they believed all things happen for a reason, something I've thought also, then another person said if they believed that things happen for a reason they'd have to also believe they did something so bad as to have this illness placed upon them. The girl ended the sentence with.. I've never done anything so bad to deserve this.

That really got me thinking... I even found it to be true in many ways. It made me think of myself and my past, growing up, adulthood etc.

I too have never done anything to deserve this. I've always been a helping hand, a listener, a warm compassionate, passionate, always giving, not caring to receive, a life of service of one kind or other.

It reminded me in a way of when bad things happen to good people.

Until next time...

Prayer

This was sent to me by someone I've become closer to over time. Someone who's husband became involved to find this for me, people who could be considered as strangers from a distant in some small ways, but who have reached out with compassion, care and friendship. I can't see this friendship as anything but growing.

I tend to believe that many of us are meant to be in each others lives. Meant to cross paths for the better good. A few for the lesser good. Tests maybe.

This inspired me to the point tears fell. It happened to be sent while I was feeling terrible pain. It was received when my state of being and physical pain was overwhelming.

Within a few minutes of reading my pain began to subside. Whether or not others find this to be true... it is. There can be several reasons for it if one wants to consider that the reading itself had nothing to do with the decrease. At the very least it brought a sense of peace and tranquility within me and that alone could be the contributor of the relief. Had these passages and prayer not been available I truly believe that my pain would not have decreased at that time. I had not yet taken any pain medication. I had not been awake long. I was feeling detached, like I was bouncing in and out of myself. I contributed that to the possibility that I did not take my Cymbalta yesterday, or... during my sleep I did not wake to take my Morphine. Withdraws come quickly with these meds. It's why it's important to take as prescribed and on time. The pain itself is different.

I'd like to share what was sent to me...

"It is important that we approach God with integrity and in attitude of humility. But because we fear making a negative confession, we sometimes cross the line of honesty into the line of denial and delusion. Let's be honest. God already knows what we are feeling. He can handle our anger, complaints, and disappointments. He understands us. He is aware of our human frailties (Ps. 103:14) and can be touched with the feelings of our infirmities (Heb. 4:15)"

"Sometimes when you are in teh midst of discouragement, it is difficult to remember that you have ever known any Scripture. I admonish you to read this prayer aloud until you recognize the reality of God's Word in your spirit, soul, and body. Remember, God is watching over His Word to perform it. (Jer. 1:12 AMP) He will perfect that which concerns you. (Ps 138:8)"

PRAYER

"Lord, I do not understand why You have allowed this trouble to assail me. It was after I began to follow You in obedience that this trouble was manifested in my life. I have exhausted all my possibilities for changing my situation and circumstances and have found that I am powerless to change them. I believe; help me overcome my unbelief. All things are not possible with man, but all things are possible with You. I humble myself before You, and You will lift me up.

I have a great High Priest Who has gone through the heavens; Jesus, Your Son. And I hold firmly to the faith I profess. My High Priest is able to sympathize with my weaknesses. He was tempted in every way, just as I am -- yet was without sin. I approach Your throne of grace with confidence, so that I may receive mercy and find grace to help me in my time of need.

In the face of discouragement, disappointment, and anger, I choose to believe that Your word to Moses is Your word to me. You are mighty to deliver. Because of Your mighty hand, You will drive out the forces that have set themselves up against me. You are the Lord, the Promise-Keeper, the Almighty One. You appeared to Abraham, to Isaac, and to Jacob, and established Your covenant with them.

Father, I believe that You have heard my groaning, my cries. I will live to see Your promises of deliverance fulfilled in my life. You have not forgotten one word of Your promise; You are a Covenant-Keeper.

It is You Who will bring me out from under the yoke of bondage and free me from being a slave to RSD. You have redeemed me with an outstretched arm and with mighty acts of judgement. You have taken me as your own, and You are my God. You are a father to me. You have delivered me from the past that has held me in bondage and translated me into the Kingdom of love, peace, joy, and righteousness. I will no longer settle for the pain of the past. Where sin abounds, grace does much more abound.

Father, what You have promised, I will go and possess, in the name of Jesus. I am willing to take the chance, to take the risk, to get back into the good fight of faith. It is with patient endurance and steady and active persistence that I run the race, the appointed course that is set before me. I rebuke the spirit of fear, for I am established in righteousness. Oppression and destruction shall not come near me. Behold, they may gather together and stir up strife, but it is not from You, Father. Whoever stirs up strife against me shall fall and surrender to me. I am more than a conqueror through Him Who loves me.

In His name I pray, amen."

___________________________________

And in his name I do pray.. Amen

Until next time..

Pathway Of Pain

(or The Way To God)

If my days were untroubled and my heart always light,

Would I seek that fair land where there is no night?

If I never grew weary with the weight of my load,

Would I search for God’s Peace at the end of the road?

If I never knew sickness and never felt pain,

Would I reach for a hand to help and sustain?

If I walked not with sorrow and lived without loss,

Would my soul seek sweet solace at the foot of the cross?

If all I desired was mine day by day,

Would I kneel before God and earnestly pray?

If God sent no “winter” to freeze me with fear,

Would I yearn for the warmth of “spring” every year?

I ask myself this and the answer is plain -

If my life were all pleasure and I never knew pain

I’d seek God less often and need Him much less,

For God's sought more often in times of distress.

And no one knows God or sees Him as plain

As those who have met Him on “The Pathway of Pain.”

by Helen Steiner Rice.

First Appointment at Compass

Yesterday I went to meet the Psychologist and Physical Therapist at Compass. For the course of this program I'll be dropping the use of 3rd person speech from my blog. This has to do with my treatment.

I met with the Psychologist first. I gave a history, did memory tests and so forth. I filled out those psych tests and PTSD test thingy. I've was diagnosed with PTSD a few years back.

After I met with my Physical Therapist. Not like any other PT person I've ever met before. He took an additional history, more so, trying to get to know me. He asked how long I can stand, walk etc. When he looked over at me and ask how long I could sit without leaning onto the arm of the chair like I was doing.. I didn't have an answer for him. I don't always realize I'm doing that. He told me he would never be able to take my pain away, of course this is always a hard thing to hear, but I do already know this. He said he is skeptic when people say.."I'm willing to try anything" as I did also. This is when he went on to tell me my pain would always exist. I accepted his word. I understand. But there's a chance to manage it. And I'm ready to learn.

He had me try to stand one one foot at a time while he counted to 10. I did decently I think though I looked like I was flying trying to keep balance.

He dropped a pen on the floor and told me to pick it up. I did, but did it horribly, he dropped the same pen and asked me to kneel on one leg, I did so, he told me to never do it again. he could tell I hurt myself in doing so, I didn't whine a single whimper, I blew that one.

We moved to the bed, I slid up on it, he tested range of motion in my feet, I did pretty well. We tested my toes, I can bend my left, my right embarrassed me. The first 2 toes, try to bend, the 3rd and forth don't and all and my baby toe splays out like it's waving.

He poked me with a bent out paper clip, shit! But I didn't whine, my face flushed though, he could tell. He tested sensitivity, I knew I had Allodynia, was diagnosed with it before, he confirmed it. As well as another, Dystonia, also re confirmed.. He checked my body temperature in those limbs, temperatures were off by degrees. They always are.

The atrophy in my right calf is 2.5 cm, not too bad. In previous years it stayed at 2. this last year decreased to another .5.

I didn't expect this coming...

He told me to look him in the eyes (ugh) so I did. He asked me what my leg was, I hesitated and answered my leg? He asked me what my foot was, um, my foot?

Apparently I had been calling both of them "it" the entire time. It burns, it swells, it changes color see? it it it

That was a no no. I was disassociating those parts of my body from myself. I didn't realize.

With the command of having me look into his eyes and hold it.... I had a deja vu or flash back... of being back among Goreans. sheesh!

I have to start using the rough washcloth again as home therapy to desensitize, turn my stim off at night. I'll try turning my stim off at night this week, I started to last night, but found a setting while starting too that felt good, so.... on it stayed.

I'm not sure when this is suppose to start, I have to meet with them again and I don't have that appointment date yet. This time I'll be meeting with the team. What is nice is they include you in everything. It's not like one doc says one thing, and another says another, and one is going back and forth not understanding. I meet with all of them together. I've never been apart of a team of doctors before.

Today I am so sore, I suppose from pressing towards my toes when I picked up the pens or bending my foot at the same time.

As a Group Leader I speak in first person, during my new learning I have to also for my own well being. To say "she" is disassociating me from me. Interesting in a brand new light.

Until next time..

Your Gorean is Better than...

Yet.. is it?

Lately she's found it quite embarrassing to even be around people, free or slave, who are so chest thumping they think their gorean is better than anothers. There's no set of rules and just when you think there is, as in years ago, you might find that what you thought you knew... means nothing. All these years spent to have Goreans respected and recognized as a lifestyle, alternative way of living or whatever you might want to call it.. seperate from BDSM, isn't getting better, but worse.

Societies and communities grow with people.

Observation and communication, watching and listening. Learning..

The book-- Try to live by it.. and you'll find at some point that you need to get the hell out of it. It doesn't work. Then later.. it's back to the book again.

It's fine that some don't recognize the institution of marriage as gorean. That doesn't keep us from the path. It's a silly argument especially when it can be shown in many that parts of their lives wouldn't be considered gorean either. Whoopdee dooo.

Our marriage contradicts the gorean ethology. It will not stop us from believing in what we do.

Blah blah blah

Putting people down doesn't show strength.. it shows weakness. It would be much more peaceful to just live your lives and find happiness in it. Live it your way. Just be who you are. But nooooooo, afterall drama makes your day. Tranquility makes ours.

Courage is being kicked down, back handed, knocked on your ass and still being able to get up, hold ones head high and shrug it off.

"Do not condemn the judgement of another because it differs from your own.. You may both be wrong". ~Dandemis

Until next time...