Jason's Funeral

The funeral was very God-honoring. Jason's step-dad paid tribute to God's wonderful grace in Jason's life. Wow! He clearly laid out our need to submit our lives to Christ.

A high-light for me at the funeral was sweet reminiscing with Jason's sister, Angie:

We were remembering when Angie & Jason were 2 & 4 yrs old living at the Idaville farmhouse. They had thought that by dropping their 2 goslings over the back of the sofa, they might teach them to fly, but instead they broke the neck of one of the little goslings & killed it. At some point, the cat got the other.

Everyone loved to ask Jason to say "applesauce" cuz of the adorable way he said it. He also called McDonald's "Rocka-Docka" ... or something like that.

Pray for the Wenger/Staub family

Please pray for my former student's family. I had taught Jason Wenger in 4th grade at the Christian School of Grace Baptist Church in Carlisle, Pennsylvania. His Dad had died at age 29 when Jason & his older sister were very young due to aspiration when lifting weights. (He also was very dear to my heart.) By the time I taught Jason, his mom had remarried into the Staub family. The following year (while I was teaching overseas), Jason's family moved to Colorado, so the only contact I have had has been via correspondence with Jason's mom.

This news has been a stunning shock! I am so grateful for Jason's vibrant testimony apparent even in this news article.

http://www.adn.com/news/alaska/crime/story/9495726p-9406642c.html

http://www.adn.com/news/alaska/crime/story/9495949p-9406887c.html

Please pray also for my dad, who has been asked to conduct the funeral service next Friday, 14 December. Also, let's pray for the true repentance & salvation of his murderer.

holding pattern ...

Still waiting to do part 2 of the blood tests.

There's been a mix-up of special forms my doctor has to fill out for the send-out lab in order for my local hospital lab to draw my blood. It seems the doctor's office faxed them to a wrong number then sent their copy to "records" before they realized their error, so last I heard the receptionist was trying to track down all the doctor had filled in to re-fax the form.

Visit to the Lab

After 3 weeks of a run-around from my doctor's visit to the Hershey lab, to my insurance company (via phone), to the local lab, back to the insurance company, & to the doctor's office (also via phone) ... (phew! Are you out of breath yet?) ... I finally spent a couple hours at our local hospital lab this morning. What took a couple hours?! Well, since you asked, the bulk of that was going back & forth between the lab, registration, & billing to get straight what the lab codes are & whether these very expensive tests would be covered by insurance. Then, the lab took quite a while to figure out just how many vials of blood they needed.

The upshot is that I have good news & ... well, no bad news, just a couple inconveniences to report.

The wonderfully good news is that the people at the hospital's billing office were able to verify that my insurance should cover the extremely expensive Complete Ataxia Evaluation. The very helpful folks in the billing office told me that even if my insurance were not to cover the costs of the lab tests, the hospital would pay the send-out lab that's evaluating the Ataxia panel, & then the hospital would just absorb the costs.

One of the slightly irritating inconveniences is that I fasted for this blood test needlessly. The gal at the lab a couple weeks ago had seen one of the highlighted tests that calls for fasting, but the highlighting was not a test my doctor was ordering. It was highlighted by the company that prints the lab order forms.

The other inconvenience was that I was only able to get about a dozen vials of blood drawn for all the miscellaneous tests apart from the Complete Ataxia Evaluation (ONLY --HA!!) because the send-out lab doing the CAE is only open Monday-Thursday, so I need to return to the hospital next week lab to get another 5 tubes drawn for the CAE.

IBS?

I think the IBS diagnosis was made pretty hastily & am pretty certain I have no such thing. I have recently realized that my "sucker punch" reaction to even the slightest pressure in my entire belly area is merely part of this larger neuro-muscular condition, in which my muscles are contracted & my reflexes react in excess. I was sure something was wrong in my abdominal area, but I am relieved that I think I've figured it out.

HAPPY THANKSGIVING!

Answered Prayer!

I have been so blessed to have experienced more manageable vertigo episodes. This month (this week, actually) it has been limited to evenings and nights. Last month I had no vertigo. I feel the Lord is using this vertigo to point to a yet undiscovered problem, so in a sense have been thankful for it. However, I am relieved and thrilled to not be incapacitated by these episodes the last two months! Thank you again for your prayers on my behalf.

2nd Opinion

By Hershey's request, my appointment was moved back 1 day, so yesterday was my appointment. It proved profitable. The doctor was very thorough & attentive.

It seems my 1st neurologist was mistakenly saying hereditary spastic paraplegia, when he meant to say hereditary spastic paraparesis. Paraplegia refers to an inability to have any movement at all; however, paraparesis reflects difficulty in movement. So I am editing previous entries to reflect this.

Additionally, hereditary spastic paraparesis a condition that occurs only from the waist down. This does not account for problems I experience in my upper body. So my Hershey neurologist is inclined to think I have 1 of the 30-some types of spinocerebellar ataxia (SCA), the most common of which is Machado-Joseph disease.

If this diagnosis is accurate, three things do not change in my prognosis:

1. SCA is hereditary.
2. SCA is a degenerative condition.
3. SCA is not treatable; only symptoms may be treated.

Even though an exact diagnosis would not be treatable, it would be valuable for the following reasons:

1. I would know how this would progress -- what to expect.
2. I would be able to identify if certain problems I have are related to the disorder or a separate issue.
3. We would know what might be inherited by my children (depending if it is recessive or dominant).

My Hershey neurologist has ordered blood tests that would look for all of the types of spinocerebellar ataxia disorders. He doubts I have lime disease, but is having that checked, too. Please pray my insurance will cover these tests.

Thanks for your many expressions of concern & for you prayers.

Vertigo

I sure am gathering things to tell the Hershey specialist:


For ½ a year now I have been experiencing monthly vertigo episodes that last 1 to 4 days. 1 or 2 of the days each time have totally incapacitated me, where If I lift my head off the pillow, I get very nauseous.



29 October cannot come too soon.

CTS

My carpal tunnel out-patient surgery is

scheduled for Wednesday, 8 August. YAY!!

good news/bad news...

The bad news: My family doctor is not able to move my Hershey appointment forward at all, but...

The good news: My health insurance program phasing out is just in the rumor stage (our prayers are being answered) & it may well still be in existence when I meet with the specialist in Hershey. In fact, it may not be phased out at all. Who knows?!

(Like our "new" van?!)

Vertigo

I saw my family doctor this morning after my 3rd episode of dizziness lasted for 3+ days last weekend! He said it's part of my neurological problem, triggered by hormones. So far my vertigo has hit on 3 April, 10 May, & 30 June - 3 July. The vertigo on about 1/2 of these days has been totally incapacitating. I am now armed with a bottle of meclizine for next time.

My family doctor's office is working on re-scheduling my Hershey specialist appointment earlier than it presently is. They'll let me know, & I in turn will let you know. At this point, the 29 October appointment is AFTER my health insurance program is to be phased out. Please pray that an earlier appointment can be scheduled.

Progression...

Last night/early this morning was the first that the very top of my legs ached. Until now, only my shins, calve, & knees have hurt.

Appointment Made

Monday, 29 October, I am scheduled to meet a neurologist at Hershey Medical Center.

Cross-Roads

Different folks have asked me to update, but I've been in a state of limbo for a while now, with nothing definitive to report.

I did attempt to take the lyme test. Bowen sent a couple kits, asking that 1 vile be spun. Both times the cap popped off as the centrifuge was beginning to spin. My naturalpath doctor advised that I find out if my family doctor would take the results of this test seriously to even follow through with treatment before I request another kit and pay $250 to have it tested.

My family doctor said that he wasn't sure that he wanted to go that direction since the test is pretty controversial. He also suggested that I consider getting a 2nd opinion (I had been meaning to ask him about this very subject!) from Johns Hopkins, Hershey, or another local neurologist. In the Lord's providence, a name has been given to me of a young neurologist at Hershey Medical Center who sounds like he would really be open to pursuing diagnoses that have thus far been "ruled out." I am excited about getting a referral to see him soon & will update once I have seen him.

Another interesting side note is that I had to go for a nerve conduction study (in preparation for carpal tunnel surgery) at the neurosurgical office where I had been seeing my neurologist. But my neurologist is no longer there. I am unsure why his patients were not notified, but it seems that he is practicing locally, independent of the group where I had seen him. The senior partner at that office is taking the full load of my neurologist on top of those he already sees. I was due to schedule a 6 month visit with him this month. So I am wondering if I should just see the specialist at Hershey, and/or look up my neurologist, or what. I really do not know how this 2nd opinion stuff works. At this point, I guess I just want to hear what the doctor at Hershey says and go from there.

I am so excited -- I can now go on walks with the family!

Praise & Prayer Request

You may know that I slid down about 7 wooden steps (by accident) on my bottom 29 December, 2006. I still hurt a little from a bruised tailbone, but am able to report that I am now able to cope without pain relievers. Previously, I had been alternating quite regularly among Tylenol, ibuprofen, Advil, Aleve, etc, just to be able to sit down. I am so thankful that I have been able to drive since 3 January, since it is not possible for me to walk to meet Julia's kindergarten bus every day.

In regards to my mystery ailment, my naturalpath doctor is awaiting word from Bowen Research Institute because they have developed a very accurate blood test for lyme disease. It is so cutting edge, that their state has not yet granted them approval to conduct this blood test. When that occurs (probably within a couple weeks) my naturalpath will receive the kit, draw my blood, & submit it to Bowen. I am asking for your prayer because if high levels of lyme are found in my blood, I would have treatment available to me, which is more than I have now. I had done the more routine Lyme test last year without results, but as I said, this is much more accurate.