Military Surprise and Updates

It's been quite awhile since I've written. Our daughter is home from the Army. I was awoken to an early birthday surprise. We expected her home in December. 3 days before my birthday I was called out of our room with my eyes closed, I was led by the man, told to open my eyes and there before me was our daughter in her military wear, with a bouquet of balloons and holding a cake. I was so happy.

She came home with a certificate as an IT specialist. The Army is paying for 14 more months of schooling. GI bill, Health insurance for a time being, 2 more years of using the PX, she can continue to honor herself and the Army wearing her ACU's when appropriate, etc. We're really proud of her effort and achievements.

A few days before, on Monday, I was gifted another early present. A baby kitten. He's adorable and we bonded closely right away.

On my actual birthday, the 26th of October, I was in a terrible flare and rested the early part of the day. They made me a spaghetti dinner. Loved it!

I've been busy at MDJ, but we hired 1 co-leader approx. 2 months ago and 2 more approx. 2 weeks ago.

I've managed to pry myself away from our bedroom and am out in the living room much more that I had been the last several years. My laptop hasn't been in our bedroom since our daughters return home. Had already planned on making that change and did that same evening.

When I turn in for the night, I'm no longer near a computer. If I nap, I'm also not near it.

I've been playing Wii with the family and Guitar Band (I'm the singer) It's fun!

I'm still only taking 2 meds from the 7 I was on for many years. I went from 20mgs of Suboxone a day to my current 12. 8mgs in the morning and 4mgs in the evening. 1mg of Suboxone is the equivalent of 25mgs of Morphine. I used to take 30-45 mgs of Morphine a day. Suboxone would be as if I was taking 300 now and when I was taking 20 it would equal 500. eeps! I still get a lot of break-thru pain and some days I still can't budge so I turn to relaxation, breathing and meditation.

So that I didn't have to go back on Zanaflex/Tizanadine (24mgs of muscle relaxer, I was on for 5 years) I opted to try Calcium and Magnesium supplements instead this last Monday. It's for the Dystonia and myoclonic jerks and spasms. It's worse when I'm laying down or about to fall off to sleep, but it started back in my entire body which was previously eased by the relaxers.

I continue to use the tools and coping strategies learned in the FRP aka my Flare-up protocol.

Phase 2 is Monday evenings.

Beginning yesterday, We're home schooling our son. It's actually Independent Study (ISP)

We created his daily subject schedule of 6 courses last evening.

Am staying as busy as possible even through the crashes.

I know there's much more, but think that's it for updates... cannot recall much more going ons at the moment..

Hope you all have been well..

Until next time...

A bit of this and that

In the last couple of days I've been so busy. I did get the left foot pedal installed on the van. They don't do classes there, so I either have to take a course or do what we opted for and that is the man will teach me over at the Jr. High parking lot. I signed a release so the business wouldn't be held liable in letting me leave without knowing how to drive with it. It's a nifty gadget. The base of it is bolted into the floor board and the other part snaps in and out. It just reverses the entire driving experience. Instead of using right foot for gas to break on an automatic, it's the left foot for gas and break. The actual gas pedal is blocked to a foot rest for the right foot instead.

Might go later this afternoon or evening for a driving lesson. Am still too chicken to try. But I have to soon, my PT went out on a limb for me and got this covered by my WC adjuster and so I won't let him down.

I also went to the FRP Monday evening and finished my painting. My PT helped me with it. I've never painted on canvas before. Now part of me will be framed and displayed at the FRC.

If I confuse any of you interchanging FRP with FRC, FRP is Functional Restoration Program and FRC is Functional Restoration Center.

I put in a full day at MDJ yesterday then watched Hells Kitchen and America's Got Talent with the family. Dang.. young Thia is amazing. but I like Breaksk8 too.

I'm still doing Yoga everyday, just not always 3 times a day, or twice. Okay, I do it one time, just one time... just once..

mostly.

I listen to music alot more again. I dance more often, granted it's with my upper body more than my lower at all, but it's still dancing, even when I'm on my ass. It's movement.

Oldest daughter is suppose to be moving out soon. My FRP psych said that was a good thing. (It is). but then tonight when I asked her again, she said she's not sure. Ugh

It wouldn't be so bad if the grandson hadn't colored up the walls, fed nachos to the fish, put a nickel in the nearly brand new washer (that is no longer working because of it) If it wasn't under warranty and the extended we purchased for when "anything" happens to it, we'd be out 800 bucks. Paid 1,600 for both washer and dryer approx 4 months ago. So we'll be having it fixed soon.

Oh and did I mention a nickel in the Wii too? Yep. Had just got it for xmas, this was oh 3 months after xmas. So it sat on the shelf for months. The man finally took it apart and Yay! Fixed it! Phew. He had just got me the Wii yoga and I had never used it.

Hm... yeah so the kid needs to pay better attention to her child. Because that's not the half of it.

Well sometimes parents have to kick 'em out of the nest and see if they can fly, but even with the stress doubt that'll happen but things will have to change. Big time.

Other daughter is still at Fort Gordon. She was never deployed because of the fracture. She did though graduate from AIT months ago. Not sure when she'll be home.

Son starts 7th grade next week. He just did a new track. His first major one. Usually he's a feat with Cash Boy Click. He was 7 or 8 when he did his very first feat. He does YouTube videos on a regular basis.

Was making hamburgers the other day when grandson turned around and said "Nana, I don't wan na crabby patty". lmao

I'm in good spirits. I do feel a crash coming. The FRP really gave me back my spirit. I can handle the crashes and flares better.

I mean.. I only cry 7-8 times a month now instead of once or twice a day. lol
I haven't broken anything in a long time. hahaha I did have that meltdown a month or so ago, but other than that am handling life as best as I can under the circumstances.

I had to charge my SCS earlier and haven't been to sleep yet. I can't wait until they come out with one that doesn't need to be charged every couple of days. They are coming out with one that will move with the body (the stimulation remains on and at the same level regardless of what position one moves in) Mine decreases in stimulation when I bend forward in a sitting position, yet gooses me at high power when on my back.... soooo yeah that will be a good thing. When I had my revision my medtronic specialist said in the next 2 years.

I have to have my battery replaced next year (cut yet again), I wish the change would have been sooner so that it could all be done at once, but noooooooooo.

Am gonna watch some American Justice before my inbox fills up with the days group posts..

Until next time..

2 weeks since graduating

Tomorrow will be 2 weeks since I graduated from the FRP (FRC). I can't say I've kept up on everything, but I have done more than before program. It's the same in some regards. A decent day comes along where pain is a 6 and I think... I can handle this.. I can go forward and make even more of myself and then those hard 8's come and my self-talk goes down hill.

I did get my authorization for the Left Foot Accelerator and need to make an appointment so that it can be installed on the van and I can be taught how to use it.

My 3 month post program goal was to drive myself to Monday evening Phase 2 classes.

We went to the drive-in movies Tuesday night. Saw Orphan and the Hangover. Okay movies. Was nice to get out.

Have some reading to review

Until next time...

CFRP Graduation July 17, 2009

Not the actual Group Photo, it does include those who graduated on this day. (The 4 girls up front)

Until next time,

FRP ended the 10th (the 17th is graduation)

Friday was my last day at the FRC. I was suppose to graduate that day but on Thursday it was postponed until next Friday. I don't go all this week, just Friday. I do have a doc appointment tomorrow and I'll wean back off Morphine (for the umteenth time) and onto Suboxone. In my research I have learned some people are getting 50+ up to 90 percent of relief on some days from pain associated with nerve damage. Am seriously praying hard for the same.

I need to work on routine. Tomorrow will be my first day of it. For sure each morning that I wake up I'll set 3 goals and do my yoga. By weeks end he should have a daily routine scheduled for me and while this will work best for me, no one is suppose to be setting it for me other than me. ( according to non lifestyle oriented guidelines lol )

It's been a hard 6 weeks. The program exceeded my expectations in many ways. I exceeded my own expectations. I would encourage anyone with chronic pain, incurable diseases and disabilities to look into it or one similar. I increased my range of motion in all directions, my walking and standing times. Individual feet standing time. Everything.

Starting next week, I will continue to go on Monday's for.... hm, mostly indefinitely. Instead of a full day, it will only be from 4 p.m to 5:30 p.m.

I'm still waiting on an authorization for a "Left Foot Accelerator". Am not sure if I mentioned that or not yet. But it would give me back the ability to drive at least nearby.

I really want a job outside the home.

I can finally wear sandals for about a total time of 2 hours a day and sneakers with socks for an hour. I don't think work will let me go barefoot as I have been. Even at program I was barefoot 'cept during desensitization therapy and using the rest room.

Don't have too much more to say right now...

Until next time

Discussing Pain Can Cause Pain

Greetings everyone
(Cross posted from MDJ June 21, 2009)

As you know I've been quite busy with the Functional Restoration program which I've been attending since May 26th. I will graduate around the 15 of July.

When my doctors told me to let everything go that had to do with RSD/CRPS, I didn't understand. I even struggled with it. I didn't understand why they would tell someone who's put years into advocating, promoting, advertising, supporting RSD related circumstances and their heart to just.... back off.

I'm finally understanding why.

When we speak of pain, share our stories, discuss WC, all the pain it's caused us physically and mentally, the turmoil, the stress, how there is no cure for us, we are reliving the injury and pain that brought us to a suffering point of existence over and over again.

After deep deep thought, I can now understand what they mean and for our own sakes.

While I always believed that opening up (when I was finally able to do it) was a road to acceptance, I never believed in any way that by doing so could be detrimental to me.

Because I've started too much that I can't go back on, I won't be leaving what I did behind. (what I did was bring many of us together, offer knowledge and insight, and more, just like most of us do) We're on this road to make a change, provide awareness and really try to do something about it.

Instead I have to find balance to do as my doctors instructed me AND finish what I started.

Now I ask each of you.. (Please think about this carefully)

Does it help you to speak of your prior lives, your existing pain, all the hell this has cast down upon you...

Or when you really think about it...

Does it tense you to do so? If it tenses you, it's adding to physical pain, if it's causing you to think back, it's adding to your emotional pain. This will always keep us in a painful cycle.

Just because I've finally come to believe this to be true, at least mostly true, doesn't at all mean any of you do. Instead, I would just like to know your feelings about it.

There is no right or wrong answer.

Thank you in advance for sharing...

( My name has been omitted because it just doesn't matter)

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...

2nd Week of the FRP completed

Cross posted from MDJ.


Evening everyone

The last two weeks have been so hard. I began the Functional Restoration Program last Tuesday as Monday was a holiday. While I was so interested and hopeful of the program on Tuesday, I was late Wednesday because I thought I couldn't handle it. My legs were hurting, my feet were on fire, it was too much. I wasn't going to go in, but I did. Everyday I do PT, everyday I do Yoga, everyday I do relaxation, several times a day I do biofeedback, everyday I set goals and so much more.

My mobility has gone from nearly nothing to weight bearing on a regular basis. It's not often, but I'm pacing myself and working harder to reach each physical goal that I set. My range of motion (RoM) has improved already. My pain level seemed to be a constant 8+ and emotional level was just as high. Today was the first day I had Physical and Emotional (P&E) level of 6/5.

During my Physical Therapy I walk, I do Mirror Therapy, I do ankle pumps, I ride a bike. I've challenged myself to stairs, I play catch with another CRPS patient to increase movements. IT HURTS. All of it! I have quit 3 entire pain medications and Lidoderme in addition to decreasing morphine 15mgs a day. I went from 7 meds to 2.

Trust me, it isn't easy. We spend a lot of time with the psychological aspects of chronic pain. We are taught about sleep, it's importance, how to sleep if one cannot. I rarely sleep. I have extreme difficulty tackling pain and racing thoughts.

It may take me some time, but I will be passing all that I learn on to you.

I have missed each of you,

Warmest wishes

Until next time...