An Emotional Wreck

My blog title seems accurate, but I have to keep it together some how. I've haven't been well the last couple of weeks, in a daze most of the time.

On top of the constant burning in my legs, having missed my (cover your ears guys) period for 2 months but still feeling it coming just added to the over all aches and pains my body has been going through. I kept having panic attacks, one minute I was there, the next I wasn't. A frightening feeling of jumping out of ones own skin and hopping back in just as quick.

I finally started my girl time and ... Ugh!

Spacing out when being spoken to, my mind was on something else, sensing something coming. A feeling of discontentment and then it happened.

The man lost his job 2 days ago.

He's just as emotional but I am his calm. I have to be. I am his security to feel it will be okay instead of that it won't be.

Prior to finding this out, I've gone days without sleep, other days I sleep too much, and I have become burn out on doing anything. I'm behind in housework, I haven't fed anyone more than once or twice in more than a week or so. Last evening I made pork chops and even that seemed to be a major accomplishment.

If I thought I could work outside the home I would be already doing it. I've been promoting my adult toy stores the best that I can without purchasing advertising packages. It's not easy when competing against top businesses in the same category. I won't spam people. I'm not the type to send or spam the links off to people in my address books. I continue to hold back on that one.
Nor have I ever entered a chat room and tossed the links out there. I can remember the days back when I chatted myself in Yahoo and was so annoyed by the amount of spam.
Spam took over! I, like many others I'm sure got tired of putting people on ignore. I quit going.

My dad is finally home from the recovery center/hospital after a 2 month stay of surgeries and infections. I haven't even called. I sent mom a text message to say I was so glad he was better finally.

I don't feel content to discuss my pain and emotions with others. I'm use to and happy being the shoulder others need to express theirs. I haven't even written in my journals or blogs for some time.

My blogs are available to more than just my contacts. Family, friends and any can read it. I've held back for that purpose. Ah well that's what this is for... to babble on my thoughts or business.

I woke early this morning. Saw our son off to school. I took 2 Neurontin/Gabapentin just a bit ago and now I'm spaced to the hilt and extremely tired.

Think I'll try to sleep again now...

Until next time...

Exhaustion Runs Through Me

I've been so tired. I have no energy. The pain drains me entirely. I'm often in a daze. I hear voices, but they seem so far away, even when they're just a whisper away. Conversations, television, etc.

I've been asked to co host the Living with RSD radio show beginning Friday June 18 @ 9:00 a.m. PST Guest is a pain management physician with further specialties from NV. while the current co host takes some medical leave days. I'm excited. A little nervous, of course. The shows are live and not scripted. The show I was on last month turned out well. After a few shows I should be fine. The host takes care of nearly all the interviewing, I'll chime in as necessary. I'll be managing the chat room as well. The host is wonderful. She's done well to bring so much information to the masses. Couldn't be happier to be apart of it.

I'm helping a man promote awareness for his "first medical (marijuana) defense trial". Advocating the medicinal use for chronic pain. He's the one facing trial. His story can be found here http://www.CRPSAdvisory.com/JeffreysStory There will be more to come.

I've been really busy. Major tool for chronic pain is distraction.

Been trying to take care of the men of the home, but it's getting harder and harder. My body is so weak. I can get dinner's prepared, cooked and served 3-4 days a week at best. For every day up, it's still the next down. Sometimes I can go 2-3 days in a row, but then a hard crash. Just wish it was a crash that came with sleep. Solid, undisturbed sleep. Never the case. It's a cycle I just can't break. My body can't take it. I have so much guilt for not being able to do more physically. While I know it's not my fault it doesn't make it easier. I care a lot.

I want to do more, I want to jump and up and down, dance, or ski, It hurts like hell to just stand, and when I do, I have to raise my spine slowly up into proper standing position, or my back and spine seizes. Taking just a few steps is sometimes unbearable.

I try to smile often. I love all that I do to help others and all that I advocate for. I wish I had more left in me to do even more. It makes me happy and gives me a sense of purpose. My calling must be in here somewhere. I have to pace my time and effort carefully.

I may need to return to one of the medications I gave up last summer. I made it a year! It's been a really hard year. I did it!

My pain feels like a blow torch has been set to my flesh and the iciest of ice picks have been thrust through me. Continuous, an intense constant ache right down to the bones. Body seizures, jerking hard with no warning, just to cease as quickly as they occur.

Having to tell the one you love to stop a tender caress is as painful emotionally as it is physically. It's really sad.

I can feel myself slipping faster and faster, but there's no rock bottom to crash into, I have to catch myself before I fall. Me! I have to have the will fly upward and so much more than that the determination to go on.

I keep telling myself "pain can't break me". Oh but it tries. I no longer pray for a cure. I pray for calm and ease. Inner peace. I'm really not a sufferer, I am a survivor.

It's all so bittersweet

Until next time...

Pain Pain Go Away...

It's been awhile since I've written. Been having terrible pain in my back/spine/hip and butt.

It was so bad I upped my last pain management appointment to bypass going to the ER. They gave me a shot of Toradol which barely took the edge off. A couple of days later they prescribed me a Medrol pack. A medicine one takes 6 of the first day, then 5, 4, 3 and down until completed.

During this time the man went out of town for 2 days on a previous commitment. He would have stayed home but I didn't want him to cancel.

I was watched over by the other man of the house and our son.

I was forced to resort to the use of my walker... and for days I needed assistance just getting to my feet. I couldn't stand straight or raise my back up to it's proper position. I could only walk slouched over for days. Finally I was able to raise, but oh my did it hurt. It began to ease and within a day or so it was back.

I've been stressing over the fact that I haven't been able to do dinners and chores like I want to. A couple of nights a week the men fend for themselves. It really hurts my feelings. I feel worthless. I know they understand. If they didn't I would be forced, but forcing me wouldn't get the job done either. I'm just grateful I'm not put down over it.. I put myself down enough.

Dad finally got out of the hospital just days ago. He beat a staff infection from the first hospital. He was in a second for rehab, spent time there and was able to go home. He has a long road of recovery ahead of him. Am thankful he made it home.

I was asked to be a guest on an online radio show... Living with RSD.. and I'll be speaking about functional restoration.. will let those interested know when my show date will be. I may not post it here, instead privately for privacy reasons and to protect the station from any spam or unwanted advertising since my blog is all of me. Some things should be separated.

I was honored to be asked and chosen for this. It's an hour long segment and live. People can call in and ask questions during the show. For those who can't listen live, it will be archived and downloadable.

I don't have any other doctor other than my pain manager. Not even a primary physician. More must be going on... and part of me doesn't want to know while the other part tells me to find out or else.

Pain is a sign of something wrong.. it's our warning that there is.

I know my body enough to distinguish Fibromyalgia pain from CRPS pain. Fibro pain is a result of fatigue and stress, muscle pain. CRPS pain burns and never lets up.

Some think Fibro and CRPS are the same. They are not. Similarities exist, but major differences.

My left side has been hurting even more trying to compensate for the lack of my right.

My last block did help the pain in my knee.. phew! It's still helping it, but gradually wearing off. It returned to the rest of the right side soon after. I did get a decent week. I know for sure I was blocked at L2 and L4, but not entirely sure the other areas.

Blocks are taking a chance...sometimes they help a little, sometimes not.

After the 5 day Medrol pack, I got a break in pain for a time being enough to clean both bathrooms, the kitchen is rarely dirty and even though I stressed over it, its' been kept up.
The man or son vacuums and everyone takes care of their personal areas which is of a great help. Plus it's there own areas which is not by business to mess with anyhow.

The garbage is our sons job though I often pull it up and replace the bag. He gets behind on it. I don't like nagging and end up doing it at times and so I do it myself except for taking it out.

Ugh summer is near. I can't handle the heat. It makes my skin feel like it's being bitten. I'm not able to wear too much clothing as is.. I worry about the heat and not wanting to wear any.

But I have to. (mostly)

I am looking forward to not feeling the added pain from winters barometric changes.

All I can do is make it from day to day.. moment by moment really, nothing is consistent but pain.

I try to keep smiling.. and often do.

I may have to go back on previous meds and am trying not to go backwards.. in many ways it's inevitable. I can't stay in bed all day. Getting up is harder and harder plus I miss out on living and seeing the sun shine or the rain pour.

I have absolutely no energy and it can't be my meds, I don't take enough to keep me sleepy.

I feel so behind...

but I haven't let go of hope.

Until next time...

3 Weeks Post Pain Block

I had a really good 4 days of pain relief. The pain crept back up so quickly and I think the change in the barometric pressure added to it again.

My body tells me when it's about to rain. It goes crazy days before. I've been pushing myself to have some sort of routine. At best it's dinner for the men each night. I'm not very active at all, my legs only have so much time in a day to keep me up. I plan that up time for preparing supper. I serve them their plates, wash up the dishes and I'm down again. Sometimes I eat, sometimes I don't.

This illness continues to suck the life out of me. It's not just the pain, no energy at all.

I'm often back in bed right after dinner is taken care of. Try to relax to a little tv. Wait and hope to fall asleep and stay asleep, but I'm lucky to get 2 hours at a time.

Sometimes I try to knock myself out with OTC pm meds. (Tylenol PM, etc) I just don't stay asleep. I can never get comfortable.

My body seizers often, myoclonic jerks partially due to Dystonia which I ended up with secondary to CRPS. It's like some one pushed me hard, jerked me violently. I've hit myself in the face before when my shoulders and arms jerked. It's scary.

They are completely uncontrollable. Never know when it's coming. It's all night long and only recently starting when I'm upright or trying to walk. It's usually always been in a laying position.

Every so often, I'm found sitting up in bed in indian style, but asleep. It's the only way to ease the jerking. I assume that's why I do it. They'll let me know to lay back down and I do, but sometimes I do it again not knowing I'm doing it. I find myself sitting up all the time.

I worry over it, but what can a girl do?

I don't use my wheel chair in the home. I use my legs. But it's getting harder and harder. I have to pace myself.

Really that's the only reason they get dinner... pacing. If I over do it, we all lose out.

Our daughters have been moved out for about 6 weeks now I think. I'm the sole female here. 2 men, the son and I.

I may be having 2 more blocks set up at my next pain management appointment. A few days of eased pain isn't much and some mind think not even worth the risk, but in my situation it is worth the breather I get when pain decreases enough for me to smile and mean it.

I'm reconsidering having the nerves severed permanetly. If I do it, I may never walk again. I wouldn't feel my foot/leg.

There are no good options with this illness. Learning to manage ones own pain with the assistance of a pain management clinic is all we can do.

Visual imagery, meditation, distraction, mobilities, meds, spinal cord stimulation and physical therapy.

Move it or lose it.


Until next time

Feeling PAIN of Others

How many times have we heard over the years or claimed to feel the pain of other's? My mom has claimed to feel my pain, my Master feels pain in the same area's as I do and when he had his heart attack when he was 38 (He's 42 now) I swore I felt his.

Usually it's passed off as coincidence or that we are experiencing it from our minds. Just the thought of it makes us hurt.

An article in my monthly Pain Monitor from the American Pain Foundation piqued my interest further.

The article from Reuter's is located here: The Brain May Feel Other People's Pain

I'm left to wonder if we really feel some one elses pain or if our brains imagine the pain, therefore, we feel it.

It's been said twins especially identical feel each other's pain and perceptions.

Is this a connection of closeness?

In the article people are stimulated by images of pain. This would mean no closeness or physical connection.

Interesting all the same.

Until next time...

Lingering Pain

For days now, weeks even, pain has been lingering harshly. Partly due to the fact I slammed my foot somewhere at the side of the bed causing a small cut, I stumbled and rolled on my toes. I knew it was giving me troubles and when it happened I even screamed out something to the effect I broke it again. As the initial pain from the slam eased down, I quit thinking about it. Going to the ER wouldn't have done me any good 'cept caused us a medical bill. Not like I could have gone to get a shot of morphine or something for that pain.. I can't take Opiates while on Suboxone.

One thing I learned in the FRP is not to focus on pain. In prior years I did. I think many of us do.

An example of focus would be that I would often look at my foot, and dwell on the 3 scars there, the discoloration and so on.

Days later when I took a really good look at it, wow. No wonder. When in the shower I hadn't looked down at all, soaking in a epson bath I did. There's a dark bruise from the beginning of my third toe to the side of my baby and at least the size of a half dollar moving upward toward right mid foot with a small cut from the impact.

But that's not where it hurts the most from this recent injury... it's hurts above my ankle on the right. Stabbing and deep.

I took pics in case my PMD wants to see or just to keep in my home file.

It's not easy to not focus on what hurts. Distraction is the best.

I've been using my Light Relief System for my right hip and thigh... it helps while it's on me, but not much after its not. It's the heat source that works best I think. Course the lights may have something to do with it.

It was a costly modality when my Master purchased it for me a year ago.

I'm thinking of trying aspercream again. I used all those products years and years ago. Salonpas, aspercream, icey hot.. capsaisen? etc.

But anything with that icey stuff in it makes me scream. Am serious. Not a good thing at all. It doesn't help, it worsens it.

I slept with 6 Lidocaine patches on last night and continued to wear through out the day. Usually one is to wear them 12 hours on 12 off I believe, but mine are prescribed for 20 on, 4 off.

I had them stuck from my right butt cheek to beneath my leg and my hip and thigh..

It just doesn't penetrate deep enough for relief. I can't recall the ingredients of the asper cream but if I do recall correctly... it's just an aspirin pain relieving cream without all that other crap.

You'd think the others including bengay for arthritis might help me for my arthritis, osteo etc... but I guess because my CRPS overlaps it with the nerve damage it's why it doesn't.

I'm just glad I didn't biff it again, my knees have taken on much damage from falling. Ugh.

Each time I fall I'm reminded of the original fall that caused all this. I guess that's the PTSD messing with me. Remember specifically tripping and having my hands out to break the fall, and tripping and tripping because there was nothing to grab onto. Needless to say I really did fly. lol Until I landed on the back of my head, my ass, and my back on a hard cement floor..

I never was xrayed for any of that. And I never did push it.

Looking back maybe I should have. On the other hand, sometimes it's just better to leave things be. Dunno.

It'll be 9 years on the 26th of this month.

Nothing has stopped hurting since. But in it all I've been able to walk many shoes I may have otherwise never done.

My knowledge, compassion and understanding keeps me going.


Until next time...

It's Been Hard but Worth It

The last couple of days have been really hard. I already gave up most of my meds prior to this. Actually 2 weeks now. I've already gone down 15mgs of a total of 45mgs of morphine a day. Yesterday was my first day to cut down another 15mgs, my day time dose. I had a really hard time. Yesterday was hell. Pain on top of pain on top of withdrawals. I was allowed to take the evening 15mgs. It didn't help. I didn't go in today. My body is freaking out, every bone and muscle is screaming. I have to go in tomorrow as it's my evaluation for the next 3 weeks. I was only authorized for 3 of the 6 weeks to begin with.

I've learned a lot. I'll still do my yoga tonight. I had a hard time pulling myself out of bed at all. But I had to. I'm in the living room now. Being out here is a big thing even though it might not seem so. I've been isolated so long pre program. When I hurt, I tend to hide. That's what I know.

I felt myself coming up there for awhile, staying on routine, doing my home work, working on my factors, goals, etc etc... but today? Blah.

It's one of those days I find myself asking "How?". How am I going to do this long term, how am I really going to live life, how am I going to be able to get my ass up on those days like today and go to work, or go out, to the store, anything that needs to be done. I can handle the disability, I can handle there is no cure, I can handle all that crap I was in denial for so long, I can't handle pain!

The fire, ice, throbbing, dull, get the fuck outta my head pain that just goes on and on and on, never stops and my back up, my meds... I told them I was strong enough to stop them. I was...

just not now. lol

I go to bed on time, generally I wake up on time now (not like today) but even on weekends, I try to breathe right, I've learned to, but I have to be conscious of doing so, or I hold my breath which tenses my body then causes even more pain. I have to constantly tell myself to breathe. Even during sex. lol

I've learned that if I can do all this without meds for 7 years and take really good care of myself my body will generate good cells, which right now are so broken. It's probably not likely, but it gives some hope. I think. lol

I don't drink coffee after 5 p.m on weekdays anymore. While I never thought it interfered with my sleep, it probably does. I really am doing a lot to change things.

I'm on 25 words in the memory mastery system. That isn't easy for me. Once upon a time, I could have learned all of them fairly quickly.

Everyday we are conditioned to keep in mind, we will never be who we used to be, we have to accept who we've become.

Um... that's not easy. I don't like it. But I'm starting to come around.

Mostly.

I've dropped about a pant size in clothing since starting this program. Maybe more, am not sure, I wear loose bottoms because of the sensitivity of my scars and skin.

Oh, I wore socks for 10 minutes yesterday, I'm working on being able to wear shoes again. My baseline was 5 minutes and I made it to 10. I've started the balance board and do that for 1 minute, 3x a day. I ride the bike for 10-15 minutes depending on resistance. I do scrubbing for 45 seconds twice a day. I don't like that. Ugh. But I do it. And of course biofeedback is after each. I'm not sure if my atrophy in my right calf is getting better. Maybe I can find that out tomorrow. It's been holding at 2.5 cm for years now. Well, 2.0 then 2.5. but has never returned to normal since 2001.

Okay, so I think I've babbled enough for now... Bones is on, I like that show.

I'm about to do a new yoga position, the Egyptian stand. Try that for 2 minutes. I can only do it for 30 seconds right now, but will increase time as I go. The 3 fundamentals of Yoga... BET. Breathe, Effort and Time. ~grins

Until next time...

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...

Ice and Heat

Rotating ice and heat to try to get some comfort. This is what my own doc said to do after the center told me ice yesterday. The ice hurts. I have no idea where the heating pad went and am incapable of even trying to look for it. So in the meantime, microwaved towel, it just doesn't last long and when it gets cool against my flesh. Yuck.

My meds are barely helping

My SCS is on high

I go to PM on Tuesday and will get the xrays after.

For now I have 4 pillows wedged between my back and the bed helping to prop me up some, 2 other pillows under my left arm, 2 more behind my head and 3 to elevate my legs. and a feather blanket just for warmth.

I'm starting to itch with the stim so high..

What a night it's going to be

3rd and Last Block Completed

Yesterday morning I finished my last block in this series. I went in with some back discomfort, spasm, I suppose it was. And came out worse. I was diagnosed with Degenerative Disk Disease a couple of years ago, so maybe something it my back is rubbing against another part, or the disk is slipping, I don't know. I can barely walk. I can't bring myself to my feet without either help, or as I've done a couple of times now, forcing myself in utter agony. I need the walls and furniture to assist me. My doc blocked my right foot and my right hip this time. I doubt the pain I'm in now has anything to do with the injections themselves. At most was irritated further by them.

I'm waiting on the surgery centers day after follow up call to let them know what's going on with me. Last night I thought I was going to need to go to the ER because I was getting feverish on top the pain. Fever or extra redness at the injection sites are suppose to be reported immediately.

And while it may seem like I get whiny from time to time, I don't rush off to the ER, or the docs just because of extra discomfort. I push myself to tolerate it and get past the moment, minutes, hours, or days sometimes. My life is pain, other than short fixes at best, it's all it's ever going to be. I've accepted that. They made me.

It's not like the hospital can really do anything for me, anyhow. Give me a shot of pain med, morphine or whatnot. I have enough meds at home including morphine, so going out to get more just isn't worth it for me. The only difference is that 10mgs of morphine injected is much stronger and works much faster than my daily intake at home. 30mgs in the A.M and 15mgs in the P.M. It's actually called MS Contin, each 15mgs is a 12 hour time release. The generic term is morphine.

I'm about to have a few Lidocaine (Lidoderme 5%) patches put on my back and legs. Those aren't going to help me stand or walk though. Sheesh. Get relief in one place, or two, and get screwed harder despite being stabbed with big needles approximately 15 times in the last 3 weeks.

This disease hasn't stolen my spirit yet, oh it's tried numerous times and I've fallen victim to the depression that comes along with it, it's taken nearly all the rest of me, but one things is for certain.....it will never have my soul.

Until next time...

Be good...
... Or be good at it!

Decreased Pain

My pain is still decreased in my right foot. It worked! For how long I will not know. I'm having some trouble with my calf and leg. My back at the injection sites is still sore, but otherwise am doing much better.

In the foot itself my pain level is a 2. Combined a 5.

I really needed a pain break and I got it good enough and I still have 2 more chances.

I am grateful.

3 Lumbar Sympathetic Nerve Blocks

I was asleep when the call came in to schedule my blocks. It's at the Sacramento Pain and Diagnostics Treatment Center, also known as Sacramento Surgery Center.

I've been thinking about it since I woke up. I had gone back to sleep after the call.
I admit I am nervous. I am every time. You have to have trust in your doc or who would want someone they didn't trust to shove needles into your spine. I trust him. He's been my Pain Manager since 2004. He's done all my blocks, have had 11 already, 3 sets a year usually, last time I only had one. He also did my trial SCS and then my permanent.

I go in, they start an IV, prep me, the gown and all that. They let me wear panties, but otherwise I'm naked beneath the gown. I wear low cut panties, otherwise they have to roll them down to expose the upper part of my ass. Sometimes there's blood drops on them after.

They wheel me into the operating room and I roll from the one bed onto another and onto my belly. My left arms is placed on a rest board where they inject me with 2 types of med to knock me out. There have been times I have woken up during the procedure.

That hurt! I could feel the long needle pushing and pressure inside me. When that happens, they knock me back out. Thank God! Waking up could cause major complications, one wrong move and that needle could slip and cause paralysis.

Because I'm so desperate to feel better, it's the price I pay, and I'm willing to accept the consequences.

After the doc is finished, they wake me back up. There's usually 4 people in there. The technician that runs the...hm.. well it's like a tv, xray thingy, it's where the doc can see where the needle is going when he's injecting. For example, before they put me to sleep, I can see an xray image of myself on it. Then there's my docs assistant, the anesthesiologist, and someone else as a backup for whatever. Maybe even a student.

When I had my SCS impant, there must have been 10 people in there. Including 2 from Medtronic. That many people saw my bare back and ass. Gosh!

Anyhow then after I go to recovery for a half hour, the doc checks my legs for warmth. The block if it takes will make the flesh extra warm to the touch. If it does get warm like that then I would have to be taken back in and do it all again.

I usually come home with 4 holes in my back. Actually more near by upper butt, slightly to the right. I guess it would be the lower back. Very low.

I'm just praying atleast 1 of the 3 will do me well. It's never happened with any of my blocks, but if the first worked, that would give me 1 full week of decreased pain, if the second worked, another week, if the third worked, another week. I could have a chance at an entire month or more.

I pray for that often.

If they work at all, I only get a couple of days at most. A couple of times, it didn't work for more than 6 hours.

Each time I'm required to fill out a pain diary. I track my pain levels from the time I leave the center (the nurses track the first one) for 36 hours. Then it wants to know how I felt on the 3rd day.

I've posted my pain diary online at my other blog before. Maybe I'll do so here as well.
Will think about that.

Counting down.. less than 5 days for the first.

I Really Need a Butt Rub

That Gizmo (SCS) is like sitting on a cell phone all day, ya know. I begged my Master to rub my ass, but he's busy, I begged my daughter and got smirked at, so I begged the grandson, I said 'Tai...nana needs a butt rub, he repeated in question form, nana wanna a butt rub? I said, yes please, he said... no nana, I no wanna.

~hangs my head

Gosh!

My butt is really aching, guess a wench has to do some things herself, sometimes...

(slides my hand down my shorts)

No peeking people, I'm kinda shy

Wiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiii

Or is it Wweeeeeeeeeeeeeeeeeeeeeeeeeeeeeee? It's definitely both. The Wii has piqued my interest in regards to physical activity almost more than anything else this year. I really like the bowling. I love spending time with my family playing it. Being ambidextrous I'm much better with my left hand than my right. I just can't play with my right the same, but I do have one up on the others when I need to switch, since they can't seem to maneuver with their non-dominant limb. I can. (smiles)

I'm thinking of getting the Wii fitness, I already asked for it, but I know I won't play with it as much since it takes more leg activity than the sports does. Yoga might be good for me, though. Fitness comes with dancing. I remember when I use to try the DDR or Dance Dance Revolution. It was so fun, but my legs couldn't handle it for long and the payback was ten fold.

I don't even spend as much time on my treadmill that I should. Am lucky to be able to stay on it 3-5 minutes and I need to use my arms to lift my body to relieve strain off my legs.

I'm still waiting for the surgery center to call, but I knew there would be an extra delay, plus it has to go through the utilization review board (they're haters). If I could get a good block, decrease in pain, and all that good stuff then I would have a few days or more to be active. One of the necessities after a block is extreme physical activity, therapy and new pain.

More Wii here I come

Wweeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

Fall Outs

I've been having a fall out with someone for awhile now. Unstable for the last few weeks. It's best to fix things and move on. I just worry it will happen again if I let my guard down once more.

Time always tells.

If any of you out there have fall outs, try to fix them, it's not healthy for any ones mindset to wonder what they did or what they could have done to change it. Things happen. Fix it!

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Christmas is so near, our daughter and her man should be arriving from the Army by next week. First they were suppose to arrive home the 17th, and then weren't going to make it home at all. That was heartbreaking! And now a possibility that they will be home afterall. I sure hope it doesn't change again. We miss her and are very much looking forward to meeting her boyfriend.

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Pain isn't treating me kindly, the cold weather doesn't help my bones. Having difficulties walking at all today because my right leg keeps seizing. That's something that comes and goes and never quite sure when it's coming. My flares have been rolling right into another. It's tough. No complaining though, everyday is a lesson learned on how to cope.

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I do hope everyone out there is having a good holiday season.