Chinese New Year 2008

Here is Rachel at our Annual FCC Chinese New Year. The first 2 pictures were taken in front of a mural of the province where she is from: Yunnan. The Yunnan Province is located in the southwestern portion of China. She is from the city Kunming which is also known as the Spring City because it doesn't get too cold or too hot. When we were there in July of 2004, the temperatures were only in the 70's. It was in the high 90's in Beijing and Guangzhou. Yuck! The humidity was so high that it was miserable just to be outside for a short time. The 5 days we spent in Kunming was a welcome relief. I can't believe it has been over 3 years since Rachel came home! She was only 8 months old!




The next picture is Rachel dancing in front of everyone with all of the girls her age. She went to a one-hour dance class the week before. She sat and chose not to participate during the class and kept saying over and over that she didn't want to dance. I told that I wouldn't make her, but if she changed her mind........Well, my mom was with us that night and she somehow convinced her to dance. I have no idea how she got her up there, but she did! Rachel really did a great job! She was SO proud if herself (we were too!)

They also had a play area set up for the kids to play. Here is Rachel having fun on a Sit-n-Spin.

All in all it was a fun evening.

Playing in the Snow!

Last week our area got about 4 inches or so of snow as well as a layer of ice on top of that. My kids had 2 snow days, but the adjoining county where I teach had 2 snow days. My kids were just getting over colds so they didn't stay outside for very long. They had fun though! This is the first measureable snow that Rachel remembers. Zachary was busy throwing snowballs and Rachel was making snow angels. Enjoy the pictures!

Poems

I did not write the poems in the following two posts. They were on my RSD Online Support Group tonight. The author has RSD and really "gets it". This is my new reality. This is my life now.

HOW ARE YOU?

RSD patient? (or anyone suffering chronic pain)

You know how "they" ask you
that every day question
the one we all ask...
with simplest intention...

How are you?
That's the one!
It said over and over,
just rolls off the tongue.

No one really wants to know,
but I must answer it true.
Does anyone desire to hear
how we "actually" do?

Or do they look at us
and see nothing wrong?
Do they think we are fine
just getting along?

If they only knew our day
and how each one's begun...
it starts with the moment
that we see the rising sun...

to the pill cabinet first
where we silently retreat
for we cannot start our day
without meds under our feet.

Once we have swallowed
that dismal costly lot,
we journey on into our day
with the little energy we've got...

and if we are lucky,
just maybe for that day...
the pills might kick in
to take the misery away...

Even if only for
just moments in time,
I could feel like my old self again
sweet, pain free, sublime.

But most of my days
it simply cannot be. T
hough I may look fine
a fire burns inside of me.

It frankly will not matter
how many pills I swallow,
they sadly cannot do their job
for the pain will cunningly follow.

You tell me that my meds are bad
and I should get off all those pills...
before I become some derelict addict
downing them all for cheap thrills.

What choice have I left?
To alone endure this pain?
Do you know some great alternative
that will cause it to abstain?

Do you know
what my daily wish might be ...
to simply set it all aside,
say *poof*, I'm better
and leap off this freaking ride?

So you think I am cured...
because I've gained back my walk
and when I talk of my pain
you believe it's all talk!

I promise you this friend
it is NOT in my head!
When those words escape your lips
you cause my tears to shed.

Oh "they" say "How are you?"...
but they don't really want to know.
I can see it in their eyes
when I honestly answer them so.

They've grown weary of my rambling
for I daily must seem to complain.
There are many times I too am tired
of feeling the need to explain.

It has consumed who I once was.
It has robbed myself of me.
Every pain filled day
is my bitter reminder
of all that I never will be.

So please...
do me a favor...
just don't ask me
How are you dear?
We both so clearly know
you don't really want to hear.

Then you'll need not give me more cliches,
there'll be no need to steer clear...
Just don't ask me that question...
For my answer must be sincere.

5/11/07 copyright T.L.Tobac

ROLLER COASTER RSD

ROLLER COASTER - RSD

Oh twisted roller coaster I
have been propelled
to live upon

destined to this
contorted fate
not of my own volition
nor deservedly

no fun ride
this roller coaster

RSD
Reflex

attacking at will
deceiving my psyche
into thinking
though drug induced
recovery may dwell upon the horizon
and that one day we will stop at the station
where I will depart
at last
to grab my shiny prize...
remission

Sympathetic

chugging chain
to the crest
the sound tortures my brain
as it abandons me
on the opposite side
to another day of pain

Dystrophy

Destined to remain
forever strapped
to this wicked ride
praying for
moments of peace

I am
a prisoner
of it's clutches

comfort may
come at any time
and just as quickly fade
to be replaced
by searing pain
spreading
and flashes of insane heat
damp sweat
spasms
leg burning
arms aching

and yet it starts again
could it be at last?
this time on the
up side
of the
Roller Coaster RSD

Reflex
sunny day
happy ride
pain subside
drugs are working
just for today
I anticipate a visit with
my former self
(the one who doesn't ride the coaster)

Sympathetic

hope wells up within
this is it (excitedly)
could
healing come at last?
Does the shiny prize (remission)
at last arrive into
my hand?

Dystrophy

dash it all to hell
the chugging chain begins
back at the wretched drop point

for that fleeting moment
I thought I held the prize
but alas
my palm lay empty

for this ride RSD never ends
hope ever remaining
some shiny dangling object
whizzing by it with each lap
teasing me
well out of reach
passing it over and over
with each twist and spiral
of the

Roller Coaster

God
if this be your will
that I am destined to ride
I know you will be at my side
and one day I pray
You will take me to the station.

T.L. Tobac 5/4/07

Catching Up

Things have been crazy since I have last posted. I ended up having surgery on October 11th to have the Spinal Cord Stimulator (SCS) implanted. The surgery itself wasn't that bad, but the recovery was alot more painful than I thought it would be. I had 19 staples in my back and had 2 incisions about 2 inches long. I was off from work for about 2 weeks. I was on restrictions for 8 weeks which included no bending, twisting, reaching above my head, or lifting anything over 5 pounds. Those are hard rules to follow! The SCS is really helping my lower back. I feel like I have some control over the pain. However, the pain has spread..................

The RSD has now moved upward and is now in my left hip and lower back. My hip was just beginning to hurt when I had the SCS implanted. The doctor tried his best to get coverage for the hip during the surgery but was not able to. On December 21st I had another surgery to add another lead to cover the pain in my back. Sounds simple enough, right? WRONG! While I was on the operating table (only mildly sedated), I had to let them know where I was feeling the stimulator. At least 5 or so places were tried that didn't work. Not only did it not work, but it hurt like HELL!! So there I was back to square one. I left the OR feeling so discouraged. I really though it was going to work. I really didn't have any fears at all about the surgery because I had already been through it. I was prepared for the 2 weeks of being in pain from my incisions. I was prepared to be back on restrictions. I was prepared for all of that, but I was not prepared for it not to work.

I sunk into a horrible depression that lasted 4-5 days. I was crushed to say the least. I begged Steve (dh) to take me somewhere to get some help. I just wanted to die. (This was on a Friday). I just went through the motions of life until Tuesday, Christmas Day. I wanted Christmas to be special for the kids. I didn't want my my depression to spoil everthing for them. I gave myself until Wednesday to start feeling better. If I wasn't better by then, I would go to a therapist or hospital or something. When I was at that point I didn't care about anything. Nothing mattered. It was as if everything was colored gray. No colors anywhere. I hate that kind of despair. I didn't know how to get out of it. I prayed so hard th get thru this horrible time. Finally, on Christmas morning I felt a little more like myself. I didn't cry at all that day, which was a change because that is the only thing that I had been doing.

I went back to the doctor today to see what else he could do to help me. I was so distraught when I talked to him last at the hospital. The last thing I remember him saying was that maybe we could try Prialt in a Pain Pump. I really didn't even think about that at first. I was too upset. After doing some research I decided this was something I wanted to learn more about. I had a list questions for my doctor. I also told him today about some muscle spasms that I have been having lately. It had only been in my feet and legs, but now I am feeling them in my upper body as well. He asked me about my vision. I have been having some trouble focusing my eyes on what I am reading. I'll look at something and it looks really blurry. If I look away, shake my head, or blink a few times it will usually go away. I have been frustrated because anyone that knows me knows how much I love to read. Since being on Christmas Break from Dec. 18th until going back to school today, I haven't even read a whole book, only about 3-4 chapters. My doctor is concerned that I might have some type of neurological problem and wants me to get checked out to rule any other underlying problem that I might have. I asked him what specifically he wanted to rule out and he said: MS. I am really trying not to freak out about this. I just can't go there. This news really upset my mom. I told her I am not going to allow myself to worry about something I might not even have. My doctor's is going to make me an appointment to see a neurologist in the next week or two. I hope it is sooner rather than later. I hate all of this "hurry up and wait"stuff. If everything is okay from the neurologist then I will go ahead with the pain pump.

The pain pump is known as an Intrathecal Pain Pump. Basically what that means is that I will have an internal pain pump implanted in my abdomen and it will have a catheter run in through my spinal column that will constantly be giving me small amounts of medicine (Prialt). The trial will involve me staying in the hospital for 4 days to see if the new medicine will help. If it does help, then I will have a pump permanently implanted about 2 weeks later in an outpatient surgery. Just like the SCS, if it will relieve some of the pain , then I am willing to have it done.

It is hard to explain to people what it is really like to be in pain 24/7. The pain that people with RSD have has been compared to pain worse that having a limb amputated. The doctor asked me today to describe the pain in my back. I told him that it was like having a hot, sharp knife continually being stabbed in my back. On a scale from 1 to 10, with 10 being the worst pain imaginable, I have sometimes been at a 15. That was back in late September before I had my SCS. The SCS can control, or block, the pain in my lower body. The pain can generally be kept lower than a 5 on most days (somedays when the weather is cold and wet, my pain sky-rockets and the only thing that helps is a hot shower or getting under the covers or taking extra medicine). The pain in my upper body generally hovers around a 7, but can also get worse.

I am getting some help with getting around with my new friend "Jazzy". Right before Christmas I got my Jazzy Power chair. Boy can I move! I feel like I have some independence because before I was limited to going to the places that had a scooter for me to ride in, a place without too much walking, or I had to have someone be there to push me in a manual wheelchair. The ramp that I use in my van is kind of heavy, about 35 lbs. or so. It is 6-feet long and folds in half length-wise. It has a handle in the middle that is likea suitcase handle. I slide the ramp to the back of the van and pull it down towards the rear bumper. I put the und of the ramp on the bumper and unfold the ramp. Next, I guide the chair out and down the ramp. I can't just ride up into the van cecause it is not tall enough inside. When I put the chair back inside the van I just guide it back into the van and turn it around facing out to be ready for the next time. Then, I fold up the ramp. I am getting used to driving my chair. I still tend to wreck into things. Doorways are still kind of hard. I dislike the idea of being in a wheelchair, but it is the only way that I can continue to work and have some sort of life. I have already come to the conclusion that disability retirement is coming sooner rather than later.

I have to learn to accept the inevitable, that my life may never be the same again. I hate the fact the a stupid broken leg has basically ruined my life. I keep asking myself why is this happening to me? Why did one silly thing, the only broken bone that I have had in 37 years, have to turn in to RSD? I have such feelings of anger, sadness, disappointment, bitterness, regret, frustration, and many more. These feelings change all the time. I do have moments of happiness and silliness, but they tend to be fleeting. I treasure those times.

I need to re-create myself. I need to re-learn the new (and not-so-improved) me. I haven't quite figured out how to do that, but I haven't given up. My faith is strong, even though at times I ask why. God has never failed me even though at times I have been confused ny the path that He takes me. I keep thinking about the Footprints on the sand poem. I keep seeing that picture and it gives me the strength to go on. To not give up. Because I may not be able to walk on my own right now, I believe that God is carrying me through these difficult times. He is not giving up on me. I just have to have the faith to know that I may not understand the path or know quite where He is leading me. I guess I have to give up control and trust that God will choose the right path for me. The path may be difficult at times, often seemingly impossible. But then I remember that "All things are possible through Christ". He will lead me in the right direction. I have to surrender my will now and let God be in control. As my mom always says: "Let go, and let God." So be it.

Nancye