We went to the hematologist today and received the best news possible. The doctor found my low platelets confusing in that the rest of my blood-work was pretty normal. He decided to re-run the CBC and it came back normal, perfect, just fine.

I am beyond relieved. Granted, slightly annoyed that it cost me an extra $40 to re-run a test that my own doctor probably should’ve done before passing the buck, but grateful that I do not have any of the things wrong with me that the initial platelet count seemed to point to.

While I do not want to cancel the health insurance, and worry about the whole pre-existing condition clauses that come into play even when we get coverage again in the future, it is the easiest way to increase our liquid monthly funds.

Still stressed, but feeling blessed.

Jia

image thanks to Tiffanysixx6

When Accolan lost his disability benefits the first thing we did, after some tears were shed, was look at what expenses we could cut.

So far we’ve

• scaled back the cable, saving about $50 a month
• cancelled the XM radio, saving $12 a month
• cancelled Accolan’s W.O.W. account, saving $15 a month
• cancelled the Proactiv quarterly auto-mail, saving $15 a month
• talked to the Taekwondo school and suspended the auto-pay tuition, saving $250 a month*
• agreed to eliminate snack food, junk food, and take-in, which will save easily $100 a month
• cut back the food shopping, striving for under $100 a week, which should save about $300 a month
• I put in an application to my local Hallmark store in hopes of a second job, and have more applications to put in as well
• I found a way that will hopefully bring in $150 a week, right now its on a week to week basis, and I’m hoping it lasts

Additionally we’ve

• started the application process for State low-income health insurance program for the kids
• researched cheaper alternatives ($4 Walmart prescriptions) for some of the medications we take
• decided to cancel my cell phone, saving $100 a month (after we pay a $200 early termination fee)
• decided that back to school clothing and supply shopping is going to have to be the bare minimum
• agreed that Sephoni’s back to school haircut (and special entering middle school highlights) will be done by me at home instead of at the salon
• determined that our annual trip to our friend Casey’s house in MD this coming October simply can’t happen**

The original plan also included cancelling our health and dental insurance, even while acknowledging how disastrous that could be both short and long term. The hope was that Accolan and I would simply pay out of pocket for our medical costs until the group insurance renews in December at which time I would only be covering the two of us (assuming we get the kids covered by state insurance) and hopefully be more able to afford it (hoping that we will be at least on our way to getting his disability reinstated).

While the dental insurance will still be cancelled (saving $80 a month) I can’t cancel the health insurance (even though I desperately need the $800 or so a month we spend in premiums). I recently went in for an annual exam at my primary during which he sent me for blood-work. Unfortunately, Accolan got a call from the office this week telling me that I need to see a hematologist.

It seems that I am anemic and my platelets are low. Not only is this, in of itself, worrisome, but (even more worrisome), while this could turn out to be “nothing,” this could be really really bad. I was lucky in that we were able to get me in to the specialist tomorrow. I don’t expect to get any answers (other than the seriousness of both conditions), but, I do expect to leave with a list of more tests that need to be run.

I will keep you posted

Blessings

Jia

* I will actually not save this much, as I will be paying what I can when I can (i.e. a little each week)

** But, happily, she will be coming up to see us instead.

image thanks to w3bw0rx

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