Update from Philadelphia

Today I had an appointment with my doctor at the Jefferson Headache Center. Not much has changed as far as my headaches go, and they pretty much are down to their last 2 options.

They told me at my last visit that they wanted to try Botox injections. We ran it thru my insurance, and found out that they would cover 80% of the procedure costs, but 0% on the actual Botox medication.... which would cost me almost $1100. Not something we can swing at the moment.

At today's appointment she mentioned again the idea of the occiptal nerve stimulator. If you don't recall, this is a device that is implanted in me, and has wires that are attached to a battery and a control. When I start getting a headache, I can adjust the device so that it gives off little electrical shocks to my occipital nerve, and hopefully it would help my headache go away. She said that some insurances are starting to cover it, but that the surgery costs about $50,000. WOW! I thought I misunderstood and that she meant $15000, but Stephanie was in the room with me and says that she said $50K.

They gave me a referral to a pain management doctor there, who I'll go see about getting a trial version of the stimulator. I would wear it a week or so, and if it helps, then they'd implant the permanent device. This doctor is also who I'll find out from information on whether my insurance will cover any of the costs.

We're hoping and praying that insurance will cover the majority of the costs, or if they don't that maybe they can set it up as a clinical trial sort of thing that wouldn't cost me anything. I will keep you all updated as to what we find out from this visit!

Thanks for continuing to pray with/for us!

Setting up blog

Old Film 5

Old Film 4

Old Film 3

Old Film 2

Old Film

Sometimes people give me old cameras, or I find old cameras at the flea market, that still have film in them. Sometimes there are still some exposures left on the film, and so I use them. The next few days will be some pictures from a 110 film camera that Stephanie's grandmother bought me at an auction.

How To Make Apple Butter

I thought I'd switch it up a bit on my blog for tonight and share this from

my uncle Steve Custer, Enjoy!

How To Make

“Momma’s Apple Butter”

This description comes from the annual apple butter making

festivities as executed and recorded by members

of the W. Clinton and Eva Guilliams Custer

family at brother Carey’s lodge near

Ferrum, Virginia on October 13 and 14, 2011.

Participants – all siblings listed – oldest first:

Dan Custer and son Keith – Part Time on Friday

Loretta Sigmon – Thursday

Lorraine Roberts – Thursday and Friday

Cathy (Kitten) Guilliams – Thursday and Friday

Steve and Sue Custer – Thursday and Friday

Carey and Betty Custer – Thursday and Friday

Tony Custer – Showed up to collect a sample

Ann, Roger and Decon Sledd – Part Time Thursday and Friday

Day 1 – Thursday, October 13, 2011Two days, rather than trying to do it all in one day, adds to the fellowship and creates less of a strain on the body and mind (negotiation is stressful especially for older people).

Main Ingedients:

6 bushels Golden Delicious apples

2 bushels Stayman Winesap apples

Apples should be well ripened, but not mushy. Mushy apples make good cider but are extremely hard to peel for apple butter.

Sugar (to come later)

Cinnamon (last to enter)

Photo Captions:

I’ve tried to place the captions, as well as the directions and pertinent information, at the tops of the photos on the next few pages. (The inferred recipe and description are written and photographed by Steve….I really did do more than just sit around and take notes and photos!)

All participants noted, plus some additional “visitors” that had to get a hand into the fray, were peeling and cutting apples for 4 hours (1:30PM to 5:30PM) on Thursday. We delivered for the pot: 60 gallons (three [3] 19-gallon heaping tubs) of cut up apples.

We used Daddy’s 35 gallon copper kettle and provided all necessary heat for cooking using a 4 burner propane gas arrangement that Loretta’s husband, Bobby had fabricated and loaned to us. All this was set up prior to the cooking beginning on Friday.

Day 2 – Friday, October 14, 2011

Carey had the fire going at 6:00 AM, and brought 1 ½ gallons of apple cider to a bubble before adding the first apples.

Lorraine put two small kettles of the cut-up apples on the stove in the cabin and cooked them so as to speed up the cooking in the pot at the beginning of the process.

As the cooking began and continued, 3 – 4 people were washing and adding apples to the mix – here’s Betty and Kitten.

At all times while the fire was under the pot, someone was stirring the pot in a rhythmic pulsation. An old rhyme to help the stirrer concentrate on covering the bottom of the pot with the paddle goes something like:

“Two times round the edge and one up the middle

Every time you touch the bale you have to kiss the kettle.”

Everyone had an opinion on how much heat to use during the cooking – Kitten shares hers here. Consensus was to keep the mixture bubbling but not enough for the mixture to splash out.

All apples were in the pot by 8:45 ………………………and cooking continued....

Dan provided new help…………..and cooking continued…. Someone forgot to tell Lorraine, Carey, Kitten and Betty that a pot won’t boil if you continue to watch it.

Sue got into the stirring act …..and the cooking continued………………..

Apples were totally cooked up by 12:30, and we started adding the sugar. After we added 49 pounds everyone started tasting. Carey said “need more”, Kitten said “just right”, Lorraine said “too much”….everyone had an opinion. Finally everyone agreed to add another 4 pounds. After that was added Carey sneaked another 4 pounds into the pot!! We used 57 lbs of sugar total.

After all sugar was added we continued to cook/stir for another 2 hours….the dog (Gunner) was smart enough to stay away from the fire - don’t know what Debbie was trying to show Keith.

Applebutter was completely cooked by 3:00 when we took the fire off and added cinnamon. Kitten put in 5 ½ drams of liquid cinnamon – Carey said it was too much, Lorraine said just right, everyone else kept their opinion to themselves

We continued to stir for 15 – 30 minutes while the cinnamon propagated through the mix before starting to dip and place in the jars. Even while we dipped the apple butter out of the pot we continued to stir. Betty, Kitten, Sue and Lorraine formed an assembly line filling the jars and were finished taking the apple butter from the pot by 4:00 PM.

Carey finished “sopping” all the applebutter from the pot. Note: Ann continued to stir the apple butter until all had been removed.

All told, we canned 24 gal and 3 pints in quart, pint and half pint jars (some people are still complaining about having to fill the small jars because it took too much time). With the heat still in the apple butter the lids were self sealing as the lids “set” to the jars. You can note the color – see last photo – of the apple butter is a reddish brown not dark like some of the mid-west apple butter I’ve seen, and with the consistency of ……..well, apple butter. We like it almost pourable – not thick enough to have to spoon/dig it from the jar.

If you would like to purchase a jar (quart/pint/half pint) some of the same group annually makes a batch, using the same recipe, at the church where we grew up. The sale of this batch serves as a mission outreach at Bethany Church of the Brethren located near Callaway, Virginia. Selling price is less than $10/quart plus shipping. Contact Loretta Sigmon at Lsigmon@dishmail.net to see if any is available……just found out they sold out – better luck next year. Thinking ahead to next year you might be able to volunteer to help in the actual making and thus gain a front row seat to buy a jar. The fellowship alone provides enough inspiration to make you want to come back. I know I can’t wait until next year. Momma’s apple butter may not be what you’re used to but I promise you it is goooood!!!

Here is a photo of the finished product. I hope you get a chance to obtain a jar and enjoy it as much as we do…..you might even decide to partake in all the festivities and make a batch of “Momma’s Apple Butter” for you and your family.

For posterity, I include a photo of the immediate family at our annual reunion on the Saturday after making the apple butter.

A Lesson in Listening and Grace

This is our Mia. I love this little girl so much. Over a year ago,probably closer to 2 years ago, we started the super fun job of potty training. As first time parents we had no idea what to expect. Getting her to pee in the potty came pretty quickly, but going "number 2" did not come as easily. Every time she had to poop, she would run and hide. We decided to wait, thinking "she'll do it when she's ready". Age 3 rolls around, and we try again.... same results. We tried everything we could think of from prizes, other rewards, disciplining her.... everything. We made a chart with prizes every time she went in the potty, and then after she got 5 stars, Hershey Park! even a Dog! I mean we tried it all.

When age 4 rolled around, and she still was pooping in her pants, we started getting frustrated, even angry at times. "Mia, you know when you have to poop because you run and hide! Just sit on the potty!" We were at our wits end.

Finally we were at the point where Stephanie said, "OK, you pooped in your pants again, just sit in it... we're not changing you." Now I never claim to hear God speak to me.... in fact, I have so many voices going in my head from day to day, I don't know who's who. It's true. But as we both sat there, frustrated and angry with her, refusing to change her poopy pants again, God spoke to me. "How many times each day do you mess up? And each time, I forgive you. Each and every time, even though you slip up in the same areas every single day." He also said, "Just stop trying to fix it yourself, stop with all the promises of rewards, etc. I want you to just let Me handle it. Every morning you need to pray for Mia. Pray for her stomach, pray for her day. Just pray, and I will take care of it."

So we did it. We stopped getting mad, though it was still frustrating, and we prayed over Mia every morning. A few days went by, maybe even a week, with the same results of poopy pants, but we kept praying. And then..... One day she just started going and sitting on the potty and pooping in the potty! I think she had one or 2 accidents in the first couple of days, but now she's pooping in the potty all the time!

Lessons learned.... quit trying to do things on your own! When times are tough, God is there! He wants to help you, He wants you to let him take care of things! Also, think about how many times we mess up each day, often in the same areas. God forgives us each and every time.... he picks us back up when we fall! How awesome is that!? He wants us to remember that and extend that grace to people and areas in our lives.

Update: Philly

So this past Wednesday, I went back to the Jefferson Headache Center in Philadelphia. It felt good to go back, since they deal specifically with headaches.

After talking to the doctors, and going over everything that's gone on since my last visit, they told me that they pretty much have two options left.

The first option is Botox injections. This option has been brought up before by many of my doctors, both here in PA and in Virginia, but because insurance didn't cover the medicine, I was unable to try the botox. I think the last time they checked, it was about $1500 a shot. Now however, the FDA has finally approved botox for chronic migraine treatment. So JHC is now in the process of seeing how much (if any) of the cost my insurance will cover. They feel that it shouldn't be a problem, since I meet all of the criteria, and other patients there with the same insurance are getting their's covered.

The next, and pretty much final option, if all else fails is what they call an occipital nerve stimulator. I think I've talked about this in the past, but they would surgically install a lead along my occipital nerve, and it would be connected by wires to a little box that would hang on my side. When I started getting a headache, I would push a button and it would send a little electric shock to my occipital nerve and stop the headache. The procedure is approved in Europe, but not covered here as of yet. They are however having great success with it in patients that have had it done. It's a very expensive procedure of course, which is why I haven't had it done, nor will be able to have it done anytime soon, unless insurances decide to start paying for it.

So anyways, that's about it.... right now I'm just waiting to hear back about how much my insurance will cover on the Botox. My next appointment, which will be when I get the injections is December 19th. Until then I'm pretty much just hanging in there, doing what I can to deal with the pain.

Going back to Philly

For those that still check in on here for updates, I thought I'd fill ya in. As you may or may not remember, I stopped going to the Jefferson Headache Center sometime last year. Lack of finances to make the trip from VA to Philly, and also changes in insurance kept me from keeping up with my doctors there. I tried several other doctors in VA, from pain management to neurologists with not much luck at all.

Now since we're living in PA, and Stephanie has much better insurance through Hershey Medical Center, I'm going to be able to go back to JHC in Philadelphia. The doctor I was seeing is no longer there, but they were able to get me in to see another doctor this coming Wednesday, Oct. 19th. I was worried that I'd have to start all over from the beginning since it had been a while since I'd been there, but they said it wouldn't be a problem. I'm hoping now that Botox has been FDA approved for headache treatment, and they probably have some newer techniques as well, that we can finally get these things under control.

It's frustrating to not be able to plan things, cancel plans you've already made, miss small groups, and miss out on my family because of being in pain. I never know when or how long the headache is gonna hit. So tough.... here's to praying for relief!

Sorry for the Lack of news....

..... not much has changed lately. Well, actually a lot has changed, but not really anything headache-wise. We're now living in Pennsylvania. Stephanie now works at Penn State Hershey Medical Center in the NICU there. At the moment we're living with her parents, and renting our house out in Radford. We're gonna try to get things under control a bit financially before we start looking for a house up here.

As far as the headaches go, they're still pretty much every day.... some days worse than others. I had a sleep study done, but other than showing that I don't really sleep a lot, there wasn't much to it. Nothing to work with rather, although my doctor thinks I have a bit of narcolepsy, since I'm so tired during the day. I'm going to try to find a pain management doctor at Hershey, since our insurance pays more if we use their doctors.

Mia and Eli are adjusting pretty well.... Mia loves her pre-school up here, she looks forward to going every Monday, Wednesday and Friday. Eli is crawling around and getting into EVERYTHING. His favorite thing to go after is the dog food and water bowls!

I will try to update this more often with photos and information as soon as we get settled down a little more and into somewhat of a normal routine.

Big Sister meets Little Brother

Welcome to the world, Eli Christopher Sigmon

2/15/2011, 10:15pm, 8lbs 9.9oz, 20.5 inches long.

Into The Light