Since last we spoke the Summer Solstice came and went, not only without my making any mention of it here on Blade & Cauldron, but, without my making any observance of it here at home.  My depression levels are higher than they have been in quite some time.  I could run down a list of reasons why, some physical, some situational, but it doesn’t really matter.

I’ve battled depression and anxiety as far back as grade school.  Again I could run down a list of reasons why, but it doesn’t really matter.

What does matter is that I finally accepted the fact that it has become time to go on medication again.  What matters is that after the past few years of putting my own physical health on the back burner due to issues that the rest of the family has had to deal with, that I am catching up on all the Doctor visits that I have been putting off.

This week found me at the gynecologist.  It was an unsatisfying visit in that he offered me little in the way of advice (and less in the way of sympathy) in terms of my increasing bowel issues and adhesional pain.  He is simply passing the buck and sending me off to a General Surgeon – even though surgery isn’t really a viable option for me – because he is out of his depth in dealing with the level of anatomical distortion and the possibility (likelihood?) of my having continued endometriosis in spite of the hysterectomy. On the bright side, it is possible that seeing a surgeon might help me find my way to some kind of pain management in the long run.

This week found me at my primary doctor as well.  It was an unsatisfying visit in that he also wants to pass the buck and send me off to other specialists to deal with the symptomology I’ve been coping with for … well, frankly, years now.  He wants me to see a rheumatologist to deal with the joint pain and to go to the neurofibromatosis clinic in my state to address the bulk of my other pain issues.  On the bright side, while he is unwilling to discuss my fatigue issues or sleep problems, he is willing to write the scripts to help me start to deal with the depression and anxiety, and maybe one will help the other.

It’s not as much progress as I would’ve liked to have been able to report.  I am hoping that once the meds kick in I won’t feel so paralyzed by my emotions, by the situational stresses, and find my way back into blogging and, even more importantly, trying toget the business end of Blade & Cauldron off the ground.

Blessings

Jia

PS  a belated wish for a blessed and joyous Summer Solstice (Litha) to my readers and friends in the Northern Hemisphere and Winter Solstice to my friends and readers in the Southern Hemisphere

image thanks to jodishep

Last year around this time Accolan and I started a healthy eating program. By the time our anniversary rolled around the following May we had lost a total of 45 pounds.

Then we hit plateaus.

Plateaus not helped by a summer that included 3 separate hospital stays for Reya, followed by weeks of an outpatient mental health program that took us into the early Fall.

Along the way the weight started coming back on and never stopped.

A year later here we sit back at the weights we started at and we’re both miserable about it.

It sucks to be fat.  Really!

I could list a bunch of reasons why.

But, if you currently deal (or have ever dealt) with a weight issue you already know them.

If you haven’t … let me sum up by simply saying that we’re sick and tired of feeling sick and tired and sore and achy and awkward and uncomfortable and obvious.

You get the idea.

Unfortunately, while we had been really good in the beginning about going cold turkey on junk food, and on eating wholesome nutritious food, we made a few big mistakes.

1. We never really started exercising (with the exception of some Wii Fit)
2. We chose foods that were too costly (daily fruit smoothies).
3. We didn’t portion out foods ahead for grab and go lunches and breakfasts.
4. We failed to develop coping mechanisms that didn’t involve food.
5. We forgot to take into account either my digestive issues¹ or our physical limitations².

And so this weekend will see us starting over.  Not so much jumping on the wagon as taking the first baby steps forward.  We will of course be sharing this part of our journey as well.

Have suggestions for us?

• Grab and go meals
• Coping techniques
• Plateau busters
• Favorite low calorie snacks

Feel free to share them below in the comments.

Wish us luck

Jia

¹ _{I have “tummy trouble” due to a missing gall bladder, idiopathic gastroparesis (delayed stomach emptying), and abdominal and pelvic adhesions thanks to endometriosis.}

² _{Accolan is a chronic pain patient due to a double level spinal fusion and continuing disc degeneration, and I have osteoarthritis as well as pain issues related to the aforementioned adhesions.}

Cartoon Images: AKARAKINGDOMS / FreeDigitalPhotos.net

Photo Image: sammiou2000

We saw a pediatric pain management orthopedist Doctor (lets call him Dr. North) today for Sephoni in our ongoing journey in finding ways to help her heal from the Taekwondo injury she sustained back in December.  He concurred with the findings of the Doctor we saw out in Children’s Hospital of Philadelphia that we are looking at a probable diagnosis of RSD (also known as CRPS).  Since RSD is a chronic neurological syndrome, and we have ruled out any significant injury to her spine or spinal cord (as well as anything systemic like arthritis, infection, Lyme’s disease) our only course of action is to help her learn to live with the pain and hope that she recovers.

She’s already better than she was a few weeks ago.  Back in mid January her pain hit its highest point, causing her former orthopedist to wash his hands of her (as he had no explanation for it once her MRI came back clean), the sports medicine Doctor we saw following that did little to help her either.  What has helped her are three things:

• using a TENS unit not only blocked the pain signals and got her much more comfortable, but also seemed to help some of the muscle spasms to resolve
• nightly massage, starting out as gentle light stroking initially and now some deeper work
• nightly Reiki

So what next?

Dr. North wants her back in gym and Taekwondo.  But only as much as she can tolerate.  If it hurts she is to stop and wait and then try again.  It sounds cruel but she has to learn to push through the pain.  It is a hard thing to explain to a child that there are two kinds of pain … pain that means “stop you’re injuring yourself” and pain that means you have “irritable nerves” that scream without an actual injury.  That being said, she has a note that allows her to stop if it hurts too much.

He wants her doing some kind of conditioning program.  Since formal physical therapy is out of our budget ($40 copay 3xs a week indefinitely) we asked if we could simply join the local YMCA and get her in the pool to swim and on the treadmill, etc.  He thought it was a great idea and $90 a month for all of us is more easily budgeted (and creates family quality time as well and maybe will help the rest of us with weight, health, and pain issues too) so that’s the way we’re going to go.

He wants us to follow up on the Chiari 1 malformation.  Even though it is highly unlikely that it has anything to do with her pain, it should be checked out just to be on the safe side.

Why I’m still  not thrilled:

He is unwilling to prescribe any medication.  His advise insofar as her sleep disturbance is to hope it self-resolves as her activity level increases and her sleep hygiene improves due to the resulting exhaustion.

He is referring us back to CHoP.  He feels that since everything is under one roof there (and therefore we’re more likely to find in-network doctors) she might be better served there. But he still wants to see us again in 2 months.  Why?  I’m not sure actually.

In lieu of that (or in addition to, he wasn’t really clear) he wants us to get her into a child psychologist that specializes in chronic pain issues.  He doesn’t feel she’d need more than 2 or 3 sessions – he wants her to learn some techniques (relaxation, coping, etc).  But, we’ve already been warned that the Dr. is “out of network” so (while he highly recommends this person) I’ll need to look for someone closer to home that will only need a copay as opposed to a paycheck per visit.

What next?

RSD symptoms can come and go. This could resolve on its own or it could be with us for years. We can’t keep running her from doctor to doctor.  We can’t keep forking over copay after copay and getting no closer to a solution. I can’t keep taking unpaid time from work.  We can’t keep driving to offices 90 minutes or more away.  We have to find a way to help her heal and to allow life to return to some level of normalcy on our own.

We’re going to let her go back to gym and Taekwondo.  We’re going to join the YMCA.

I’m going to continue with the massage and the Reiki.  We’re going to keep using the TENS unit.

We’re going to meditate together.

I’m going to find some guided meditations, either on CD or that I can read to her.

I am going to replace her CD player and get her a natural sounds CD to see if that helps relax her enough to sleep through the night.

I may look into chiropractic.  I may try more in the way of natural healing modalities.

It’s going to be a journey I am sure.  But, right now I’m pretty much fed up with the whole medical profession.  So, we’re going to try it on our own for a while.

Wish us luck!!

Jia

Today we took Sephoni to a pediatric sports medicine specialist due to pain and other symptoms that have persisted since her Tae Kwon Do injury 7 weeks ago.

The good:

We saw 2 doctors at the office, who all-together spent about 90 minutes with us.  The doctors, unlike her former orthopedist, not only care about the fact that she’s miserable, but genuinely seem to want to help her feel better while we work on finding the root cause.

The bad:

First of all, they almost immediately recognized back spasms (which are now being treated by adding a tiny dose of muscle relaxants to everything else we’re doing).  I am not sure how her former Dr. missed those.  Additionally, the Doctor feels that she is dealing with side effects of an undiagnosed concussion. While its hard to know for sure (and the symptomology that points to a post-concussion situation could easily be explained by 7 weeks of constant pain), in our opinion its best to err on the side of caution.

The ugly:

The Doctor’s recommendation is an amended cocoon therapy.  No school for the next week.  Lots of rest.  No long stretches of reading.  No video games. No high-intensity movies or TV.  Keeping lights on the dimmer side, and volume setting on the lower side.

The plan is to do everything possible to help her find a way to sleep through the night.  The plan is to do everything possible to break the cycle of constant pain she’s been in.

The hope is to basically give her body and brain the chance to heal that she didn’t have by pushing through all of her pain and symptoms since her original injury.

It is too soon to know what comes next.  If her back pain is unchanged by the time we are back at the office next week, I will ask for further testing.  If push comes to shove, we may still take her to the Children’s Hospital of Philadelphia (who took such great care of Reya in the summer of 2010).

Blessings

Jia

Image: Suat Eman / FreeDigitalPhotos.net

I am trying to get myself back on track in terms of time utilization as it relates to blogging and other blogging related tasks. I am also trying to find the bloody wagon that I swear was right in the driveway one minute, and down the road without me the next. I’ve been stressed about a lot of things lately.  And, among other things, stress generally means two things for me …. inertia and emotional eating.

It’s not a pretty picture.

One of the things that has me tied up in knots is Sephoni’s lack of improvement since her injury at Tae Kwon Do several weeks ago.

Our visit with her orthopedist on Monday was less than satisfying. We went in nervous about hearing the results of her spinal MRI, but hopeful that we would finally be able to put a “name to her pain” and be that much closer to finding a way to relieve it.

We found out very little actually:

• we learned that the MRI didn’t show any signs of spinal cord injury (thank the Gods)
• we learned that Sephoni, like Reya, has a Chiari 1 malformation
• we learned that we need to take her to a neurologist
• we learned that we need to find a replacement for our orthopedist

The deciding factor isn’t just that he has failed to take this all that seriously from the get-go.  It’s more that he has proved himself to be not only unconcerned about her pain levels (which are still significant) but unsympathetic as well.  When he told us that there was nothing more he could do and that our next step is to go see a neurologist I asked what should or could I be doing to help Sephoni with her pain levels.  Currently we are dosing her with Advil and Tylenol with Codeine.  Currently she’s been living on a heating pad, and more recently has become permanently attached to a Total Pillow I picked up (originally thinking of Accolan) at our local Walgreen’s.  These tools manage her pain, so long as she remains relatively immobile.  But, what 11 year old wants to be immobile?

It hurts to play with her friends.  It hurts to hold her flute or to try and learn to play the guitar she got for Yule.  It hurts to lie in bed, and many nights have found her tossing and turning, still up at 11:30 when I go to bed, and up every couple of hours until morning.  It hurts to bend down to put on her shoes.  It hurts to sit in the hard plastic chairs at school.  She hurts every waking moment of every day.

So I asked what more we could or should be doing to manage her pain.  And I was told nothing and beyond that I was told that “she’s put up with the pain for 6 weeks now, she can put up with it for a while longer.”

At this point I also learned that what I lack in self control in terms of emotional eating I have in spades in terms of not smacking this man. Seriously!

When I was in grade school, I remember having a teacher that has a chart with our names on it, the goal being to earn gold stars. I no longer remember how I earned those gold stars, but I remember how much I wanted them. I think I deserve a few for this.

At this point our next step is to take Sephoni to a pediatric neurologist (who scheduled us for May … yes you read that right MAY with the hope that a cancellation will come up – or a call from her former orthopedist calls to stress that it is more urgent that she be seen) and a pediatric sports medicine doctor who luckily can see her much sooner than that.

We’ll keep you posted

Jia

image thanks to : mrfi2010