Monday, October 28, 2013

My Strict Diet (formerly known as my celery diet)

Someone asked about my diet, so here's what I wrote up:



 
I eat only 1 "real" meal a day, earlier in the day, i.e. not supper. I’m hypoglycemic, so I need to get plenty of protein. Any carbs I eat at that meal are whole/multi-grains. For example, I just had an egg wrap for lunch with tomato slices and plenty of fresh spinach on it. (Turkey dogs are my variation on this theme, also with tomatoes, spinach, & a whole grain wrap.) For breakfast I ate an Aldi protein bar (I've never had a better protein bar!) 'cause I don't want to have much before I go to the Y. Now I'm snacking on celery sticks and drinking black decaf with cardamom, perked in my grammy's percolator. I'll have a bowl of Kashi (Aldi has a version of this, too) and won't even eat in the same room as the rest of the family since that would only make me miserable ... not to mention break my diet. If I get munchy, I'll pop a bag of light popcorn or grab unsalted almonds to have with some more of my yummy coffee. If I get a craving for something sweet, I eat an apple or some other fresh fruit and/or enjoy some herb tea with Stevia. If the family eats something for supper that I will allow myself to eat (doesn’t happen often), I’ll make up a plate of it for the next day’s breakfast. Just before I go to bed, I eat a low-fat cheese stick to get me through the night.  (It has successfully prevented the "witching hour" syndrome!)
 
 

It's been a while, eh?

I thought I ought to explain why I so rarely update any more.  For one thing, my SCA (spinocerebellar ataxia) progression has progressed very little, so I don't have much to report.  That is great news, isn't it?
 
 
There are a couple aspects to my other reason.  I do not find it helpful to post every time I fall.  It seems too much like complaining to me.  Also, I do not find it helpful to dwell on these little "bumps in the road." 



 


 

I do (and have for some time) have trouble with curbs.  I usually avoid them or hold onto something while stepping up or down, but once in a while I don't have much choice and make it ok sometimes and fall others.


 
 
I must admit that I absolutely dread colder weather.  Already I have stepped outside, only to have my leg muscles stiffen, being extremely reluctant to cooperate as temperatures drop.
 

One more thing.  Even though I work out fairly regularly in the YMCA pool (most weekdays during the school year), I still struggle with my weight.  At one time (about 3 years ago), I had lost 45 pounds, but it has gradually found its way back to me.  So, on the 10th of October, I started a year long very strict diet.  We'll see what happens during this year, but so far, it's very slow going ... but I'm sticking with it!  If you want to know my diet plan, just ask!  (But of course there are visual hints on this post.)










 






Friday, November 12, 2010

Discovery

I have been walking (with my rolator) for a few weeks now with 2 friends. I do notice that if I "push it" too much, my shins ache &/or my legs just become like Jello, but I have not had any problem with my knees. However, when I stand at the sink to wash dishes or stand to bake or cook for any length of time, my knees scream in pain when I go to sit down. So it seems that standing is actually worse than walking. Hmmm. Anyone know a reason for this or how this goes along with my spinocerebelar ataxia diagnosis?

BTW, my earlier update about my calves being constantly tight & my having more ballance problems is no longer valid. Thankfully, neither of those conditions remains true.

Friday, August 20, 2010

YAY! I'm published!


The official release date for Rosie of the Oasis (written by Phoebe Bookamer; illustrated by Jamila & Joanna Bookamer) is October 13, 2010. However, the book is now available to order by contacting PublishAmerica at 301-695-1707 or by ordering from their online bookstore at http://www.publishamerica.net/product95988.html.

Softcover now available: http://www.publishamerica.net/product119196.html

Monday, June 28, 2010

Update


For those of you who follow my spinocerebellar ataxia regression, my calf muscles are now almost constantly tight & I have lately (ever so gradually) become more off balance &/or fallen when I turn to 1 side or the other. I am certainly not complaining ... just updating those of you who ask & continue in prayer. Thank you so much for your faithful prayers & loving concern. I cannot tell you how much they mean to me!!

Tuesday, May 04, 2010

Iron Sharpens Iron

A number of years ago, a friend was helping me wash the dishes. When I cautioned him not to place the knife blades against the metal of the other silverware, he protested, “But I thought ‘iron sharpens iron’?” My friend was referring to Proverbs 27:17, which says, “As iron sharpens iron, so one man sharpens another.”

I have pondered that concept many times over the years, particularly while washing silverware. It has occurred to me that how metal is affected depends greatly upon how contact is applied. When knives are to be sharpened, their sides are stroked against each other, wearing away the metal leading up to their sharp edges. In the same way, if a knife’s cutting edge is brought directly against another knife, the metal of the knife edge is worn away, having the opposite effect, actually dulling the blade.

It has further come to my mind that our words have the same effect on each other, depending upon how they are applied. The very same principle of physics that governs either the honing and sharpening or dulling and blunting of a knife blade, is greatly at work as our words are spoken. If we speak bluntly and harshly to another, without regard for our approach, we harm the receiver of those words. It behooves us to consider timing, mood, and motives of both the speaker and the listener. When our words are applied in love, they have a healing power. As Proverbs 12:18 says, “Reckless words pierce like a sword, but the tongue of the wise brings healing.” Proverbs 16:24 reminds us that “pleasant words are a honeycomb, sweet to the soul and healing to the bones.”

The words of Proverbs 27:17 bear this analogy in mind. The physical properties of iron in contact with like metal are compared to the interaction of humanity. “As iron sharpens iron, so one man sharpens another.”

Wednesday, December 23, 2009

Brief Follow-up

Last night I went to my doctor again. He could still hear some rattling around when he listened to my breathing (& coughing), so he put me on a 2nd course (7 days) of some stronger antibiotic called Avelox. I started it last evening, & during the night I could already tell it was drying me out because I was parched & experiencing dry coughing. So, by the time I got my chest x-ray, the x-ray tech said it looked pretty clear. YAY!!

MERRY CHRISTMAS, EVERYONE!!!

Sunday, December 20, 2009

min zamaaaaaaaan!

Because of the combination of my ataxia (limitations in physical activity) & my hypoglycemia (need to eat protein consistently), I had resigned myself to the fact that I would never be able to lose the weight that I had been putting on. I hit my all-time high during the summer of 2008. Since then, I have managed to lose ***45 pounds*** .... 20-25 more to go! This is due to


  1. DETERMINATION

  2. celery

  3. water & strong, black decaf

  4. increased activity (walks with my rolator, etc)

  5. 1 solid "square" meal a day

  6. 1 liquid (diet shake) meal a day

Perhaps my square meals have not been square enough because at the beginning of this month I began experiencing a tickle in my throat. Within a couple days, I was frequently going into coughing fits. I often propped my pillows so I could sleep sitting up. I finally made time for a doctor's appointment on the 11th of December. I had pneumonia so immediately started 5 days of antibiotics. The pneumonia & infection has cleared, but the cough lingers on. I still often start the night sleeping while sitting up because the coughing is worse at bed time.


There, I *finally* wrote a long-overdue update.


Oh! And by the way, as of Guy Fawke's Day (the 5th of November), our family includes a lovable 11-year-old Keeshond named Silver.

Thursday, April 16, 2009

*HUGE* answer to prayer

You are probably aware that I have been plagued by sporadic vertigo episodes for a couple years now. These episodes have typically lasted 2 to 4 days, & last summer 1 was so bad that I could not turn in bed with out becoming extremely nauseous & vomiting.

Doctors prescribed a medication which did not help the dizziness & just made me groggy. We were at a loss knowing what caused it or how to deal with it ... beyond simply coping.

But then a few weeks ago, my dear ol' dad suggested that my vertigo might be tied up with allergies. Whenever I felt the vertigo coming on, I was to take something with antihistamine. (Dad had experienced something similar several years ago, & dealing with allergies worked for him.)

WOW! Dad seems to have figured it out because a few times since our conversation, I have taken allergy medication when I felt woozy, it did the trick & my symptoms cleared up!

Monday, February 16, 2009

Learning Something New Every Day ...

Today I learned that ataxia is a symptom (i.e. imballance) & SCA is the diagnosis. I had previously thought that ataxia was a disorder & that SCA was a type of ataxia.

Friday, December 12, 2008

Merry Christmas from the Bookamer home!

"The virgin will be with child and will give birth to a Son, and they will call Him Immanuel" — which means, "God with us." ~ Matthew 1:23

We are so thankful that God came to live with mankind as Jesus Christ, and that He is still with us through His Holy Spirit. Life is not always easy, but thanks be to God for His grace through Jesus Christ and the indwelling Holy Spirit.

To catch you up with our growing girls, Jamila is in 5th grade, Joanna is in 4th, Julia is in 2nd, & Jenna is spending her last year home with Mama before she goes off to kindergarten next year. She has told me that she has decided not to have any more birthdays so that she can stay home with me. :) Speaking of Jenna, this week she was so excited to tell me that she figured out “P starts with pizza” … then later “penguin, too!”

Jamila, Joanna, & Julia all played soccer (aka football) in the spring & plan to again this coming spring. Each of them does very well in school & love to keep up Webkinz accounts.

Jamila & Joanna are working very hard illustrating my children’s picture books based on UAE childhood memories. I then scan them into the computer to create my 2-page spreads, formatting to add the text & borders. I am getting pretty excited that they might actually get published after working on them for many years. (I had an excellent illustrator friend who just never had time to finish a book to submit it to a publisher.) So far, we have the inside covers, 7 pages & the glossary for the 1st book, as well as 2 pages for the 2nd book. I am so thankful for the girls’ abilities & willingness, especially since my neuro-muscular condition makes it impossible for me to draw like I used to.

The difficult aspect of our lives is my diagnosis with spinocerebral ataxia (SCA). I just finished 6 weeks of physical therapy, which (not surprisingly) didn’t help. David & the girls really pitch in to do what I find it increasingly difficult to do. In addition to all that David already does at work & at home, he is up for a 3-year term as deacon at our church. And so, the Lord continues to remind us to rely totally on His grace as we strive to live each day to His glory.

Saturday, December 06, 2008

Coming to the end of PT ...

Next week will be my 6th & final week of physical therapy. We can't see any improvement, but hopefully it is slowing down the progression of the ataxia (SCA). I have PT homework to do, so will try to remain faithful at these balance & coordination exercises. I will miss my therapist's lower leg massage rub-downs that I have been spoiled with at the end of each of my PT sessions.

I do struggle with feeling totally unmotivated & with bursting into fits of crying for inexplicable reason, but the prayer of dear friends & St. John's Wort supplements seem to be helpful. Thank you for your continued prayer for me.

Thursday, November 13, 2008

CTS Post Script

I was reading over old comments & realized I never updated regarding the carpal tunnel surgery, so this is especially for Maxine since you asked:

The carpal tunnel surgery was a success in that my right wrist/hand no longer goes numb or tingly any more. I still wear a brace on my left hand at night so that it does not "go to sleep." I continue to lack control of a pencil or other instruments that require fine motor skills. However, that is because of my SCA, so this is not something I expect to change. I must admit that before the CTS surgery, I was hopeful that I'd be able to draw once again, but since that wasn't the source of the problem, that's not going to happen. Oh well, I am thankful that the CTS is taken care of, though ~~ no more tingling sensation!

Sunday, November 09, 2008

NEW SHOES!

I am walking on clouds ... well, not literally, but I am loving my orthopedic shoes with 3 inserts & mega support!

We won't know for another week or so if physical therapy even helps at all. After Wednesday's session, I was an emotional wreck, which is probably one reason (along with its questionable results) that I am not so vocal about physical therapy. While I do love my therapist & see the positive side of what we are doing, my time there really highlights my physical limitations and leaves me pretty "played out."

Saturday, November 01, 2008

P.T.

I met my physical therapist yesterday. She evaluated and tallied my "balance score," which was something like 30 out of 50. She'll give me a printout of her report when I go next week. I am to see her 3 times next week.

Two new things she told me about are that ...
  1. ... she will set me up with a weighted pen, weighted spoon, etc, so that my brain can easier assess the location of these utensils.
  2. ... she will get me hooked up with an ataxia newsletter, which would be helpful identifying resources, etc.
It is amazing (& slightly alarming) to realize how taxing just a PT evaluation session was on my legs yesterday. My knees and shins were in great pain afterwards, but a couple acetaminophens did the trick. My one shin was even paining during the wee hours of the morning today.

Anyhow, I really like and feel confident with my physical therapist & will report on the progress.

EDIT: Berg balance score = 38/56

Wednesday, October 01, 2008

update

The physical therapy ℞ came in the mail today (4 Oct)! David reminded me that the doctor months ago had said it wouldn't hurt, but it wouldn't help either, so we'll see...

I have been less active, so seldom experience great leg or foot pain. The most recent development in the last month is that when I stand after sitting for any length of time and also during the night, I experience extreme tightness in my calf muscles ("Charlie horses").

I almost forgot to mention 2 other progressions that I have noticed. 1 is a more noticeable stiffness of my knees. I often experience pain in them, & they give out frequently. The other is that stepping on the tiniest pebble (a mm or 2 in diameter) at the wrong spot on the bottom of my foot has made my leg totally & suddenly give out (1 Sep 08).

Monday, August 25, 2008

Phone Call

I spoke with my neurologist's nurse today. She said the 3 pending DNA tests were all negative. This simply means that a blood test has not yet been developed for the particular variety of SCA I have. The nurse also said that tomorrow she'll send me a prescription for physical therapy. We'll see if that helps at all ....

Sunday, August 17, 2008

Dustpan for Jesus

This was my favorite VBS skit from last week. Jamila played Tisese, & Joanna was Mrs. Bush.


"Preacher, may I go with you to the mission? The young African boy begged. "I want to learn about Jesus, and how to read the Bible like you do.
Raymond Bush, the missionary, looked in surprise at the earnest face of the boy. "What is your name, my boy?" he asked. "And do you have permission from your parents and your chief to go along with me?"

"I am called Tisese," the boy replied. "Will you take me, if I am allowed to go?"
The missionary promised that he would, and so the next morning a very happy Tisese followed along with Raymond Bush and his men. It was a long way from Tisese's village in the interior of Africa back to the mission station. For nine weeks, the group of men and boys traveled through jungles, plains, and desert sand. The days were long and tiring, but very exciting to a young boy who had never been far from his home village before. The wooded lands were full of monkeys, giraffe, and elephants. On the plains, lions stalked herds of zebra and antelopes, while ostriches ran awkwardly through the tall grass. Clumps of thornbushes were everywhere. The Africans called these "Wait-a-bit thorns" because when you were caught in them, your friends had to wait a bit!
Night time was scary for a young boy. Their camp had to be surrounded by a ring of fire all through the night for protection from wild animals and mosquitoes. The men would cut timber, pile it all around the camp and set fire to it. During the night, the fire was kept burning, and although lions roared in the darkness outside, the travelers with the circle were safe.

At last they arrived at the mission station, where Raymond Bush lived. Now Tisese could finally go to school! How he loved to learn. Eagerly his quick mind drank in the stories of Jesus and all the truths of God's Word. When he was not in school learning, he would follow the missionaries around at their work, asking questions. "Tisese, you ask more questions in an hour than I can answer in a week!" Raymond said one day.

But Tisese was not embarassed. There were so many new things to see and learn, he just had to ask questions. "What is that thing that you are sweeping that dirt into?" he asked Mrs. Bush one morning as she swept the floor of her hut. "This is called a 'dustpan'," the missionary's wife replied.
"Thank you!" called the boy as he hurried past on his way to school. Slipping into his seat, he waited for class to begin. As soon as the teacher called his name, Tisese rose to his feet. "Teacher," he told the missionary solemnly, "I want you and everyone to know that my name is no longer Tisese, 'the-animal-that-runs-through-the-woods.' Now that I am a Christian, my name shall be 'Dust Pan' forever."
"Dust Pan?" the teacher exclaimed, surprised. "Why ever would you want to change your name to Dust Pan?"
"Because, Teacher," the boy replied earnestly, "I was just passing your house and saw your wife sweeping with that tool called a dust pan in her hand. She carried all the dirt out of your hut with it. I want to be a dust pan, too, so that when I go home, I may carry out the dirt from the lives of my father, my family and all my friends. I want to be a dust pan for Jesus."
From that day on, the boy could often be heard praying that God would make him a good dustpan for His service. Soon he brought five of his friends to Jesus, and the six Christian boys together witnessed to others.
Time passed and Mr. Bush was preparing to take another evangelistic journey into the north country where Dust Pan's village lay.
"Now, I can go home and tell my family the Good News about Jesus!" Dust Pan said joyfully.
"No, Dust Pan," the missionary objected. "You are still too young. You should stay here in school for a few years yet, and my wife will need you to help her while I am gone."
"Preacher, I must go now! cried Dust Pan. "There is no time to lose! Even now my family could be dying without Jesus. My father could be killed in a tribal fight. My mother may be eaten by lions while working in the garden! My brothers and sisters may die and never hear of Jesus in time."
"All right, my boy," the missionary relented. "You shall go along, and may God bless you as you try to be a Dust Pan to your people!"
Once more Dust Pan traveled the weary an dangerous miles through the African jungles following elephant ant hippopotamus trails. Through burning desert sands the caravan plodded, until Dust Pan's feet were sore and covered with blisters. One night the boy lay moaning with pain as the missionary tried to treat his blistered feet.
"You cannot walk any farther with such sore feet, my boy," Mr. Bush said sadly. I will leave you here with the choef of this village and pay him to care for you until your feet heal. You can go along with me to your village next year."
"No, no! I must go with you now!" Dust Pan insisted. "My father may be killed in tribe fighting. My mother might be eaten by lions while she works in the garden. My brothers and sisters might die before next year, and never hear of Jesus!"
So when the travelers went on the next morning, the determined Dust Pan came limping along with them!
The trail that morning led through miles of tall grass, called elephant grass. Suddenly as the path took them around a sharp bend, a lioness sprang from a clum of grass stems! In one awful instant, she pounced upon a servant who was carrying a box of supplies for the missionary. With a cry, the man dodged and the lion's paws struck the box on his back, sending it rolling into the tall grass. Jerking up the shotgun that he carried, Mr Bush fired! In the excitement, he missed. Hissing horribly, the lioness disappeared into the tall grass.
Feeling shaky, but thankful, after their narrow escape, the mission party continued on. Their water supply was low, so they were in a hurry to get to the river. At last, late in the afternoon, they reached their goal. As his men pitched their tents and refilled the water bottles, the missionary counted them. One was missing!
"Where is Dust Pan?"he called in alarm. "Dust Pan is not with us! When did you see him last?" But nobody knew.
"Maybe the lioness got him," one man ventured. "If he's out there in the grass alone, he's been eaten by now," the others muttered. "There's no use going back to find him!"
"What shall we do, Lord?" cried Raymond, falling to his knees in prayer. I've already had two men killed by lions during my travels, he thought. I don't want to lose Dust Pan! "Lord, I know that You can do anything," he prayed. "Please protect this boy somehow, and save him for the work he wanted to do!"

As the missionary paced around and around the camp, he strained his eyes searching for any sign of movement among the tall grasses. Far away a lion roared its horrible, coughing roar, and a shiver went down the spines of all the listeners!
The sun was sinking behind the hills, when the anxious missionary finally saw the grasses waving along the paths where they had travelled. Running forward eagerly, he cried, "Dust Pan! Are you safe, my boy?"
Staggering wearily out of the elephant grass, Dust Pan lifted his hands in triumph. "God kept me alive, to tell my parents about Jesus!"
When the relieved missionary reached his young friend, though, he saw a sad sight. Even though Dust Pan's sore feet had been bandaged and padded with dry grass, the blisters had burst as he walked and his feet were now bleeding with every step he took. It was no wonder he had not been able to keep up with the others!

Raymond Bush called for his men and together they carried the tired boy the rest of the way into camp. Kneeling before him, the missionary did what he could for poor Dust Pan's bloody feet. "Lord," he prayed humbly, wat a love for souls is in this boy's hear! He is a better missionary than I am. Help me to be more like Dust Pan!"
When Dust Pan finally reached his home village, the battle had only begun. His father was one of the most famous witch doctors in that part of Africa, and usually killed more than six hundred people every year! In his heathen cruelty, he put to death anyone who offended him by poisoning them, burying them alive, or tying them to ant hills and letting the ants eat them. Was there any use in hoping that such an evil man would become a Christian?
But Dust Pan's faith and love won the hearts of his whole family -- even that father! Both his parents, his three sisters, and all five brothers were converted and became Christians. Then Dust Pan began to share the Gospel with others in his village. When Raymond Bush returned the following year, he found three hundred and sixty-four new Christians wanting to be baptized, all through the witness of one young boy.
What a lot of sin, darkness, and dirt had been carried out of that corner of Africa, by one Dust Pan in the hands of Jesus!

EDIT: This account is taken from Missionary Stories with the Millers, by Mildred A. Martin, chapter 24. "Historical Note: Raymond L. Bush was an American missionary to South Africa in the early 1900's. The story of the boy named Dust Pan is recorded in his autobiograph, Thinking Africa."

Friday, July 18, 2008

Postponed Visit

Well, today's visit to the specialist was a little frustrating. I'll spare you the details, but basically we've known since November that I have a congenital, degenerative, untreatable condition called spinocerebellar ataxia, so the visit today seemed pretty pointless. Jamila was a great travel companion/co-pilot, but we didn't learn much ... except why Botox wouldn't help my condition since I don't need to specifically relax any particular muscles.

In defense of my doc, though, I should mention that he scheduled this follow-up appointment ...
  1. ... to shift our annual visits to summer in order to avoid snow storms like the one that coincided with our last appointment.
  2. ... because he is willing to keep me on (rather than send me back to my local doc) due to several unsettling comments my local neurologist had made.
The major disappointment was that I still do not have the 3 test results that were pending last time I went. Hopefully, my doctor will email them to me very soon.

Right now I'm feeling pretty wiped out (my legs are achy), so it's probably not a good time to post, but generally I just stay pretty inactive & I feel fine.

Thanks so much for praying!

Saturday, June 28, 2008

A Big Bill & the Lord's Wonderful Provision

We had a bit of a shock when we received the bill from the lab in Massachusetts. We had misunderstood the various insurance explanations & thought we were covered from the costs of this "for profit" organization that was performing the Complete Ataxia Evaluation, which is designed to analyze DNA. We were then required to send 25% of the bill amount to the lab, along with an application to qualify for paying only that amount, copies of certain documents, etc, within 30 days of our receipt of the lab bill. The 25% was just about covered by the government's stimulus tax return, which came to us just at the right time. We then received prompt word that our application was accepted & that everything was squared away with the lab! (What a quick answer to prayer!) Loving brethren have also generously helped us with the amount of the bill above and beyond that tax return, and we are very thankful for them and for the practical love they have expressed!

Just to keep you up on my mobility (or lack thereof) ... We found a corner of our bedroom where the computer can fit. (It used to be downstairs, and I rarely go down at all any more.) David and the older girls help a lot with laundry downstairs. I spend a lot of time here at the computer -- it's the safest for me to not tempt my poor balance much, so I stay off my feet a great deal. The downside is that I have gained quite a bit of weight. The combination of my inactivity and my hypoglycemia makes it almost impossible for me to loose any of it since if I cut back on my protein intake, I become quite ill.

The other thing that has helped me quite a bit (in addition to having the computer upstairs) is that my dear, handy husband has fastened two grab bars: one to make it easier for me to step up onto our back stoop in order to enter by the back door and the other to use as I step into our bathtub easier.

Hershey has moved my appointment to 14 July, so I will update after that. Thanks again for all your prayers and expression of concern.

Wednesday, February 13, 2008

Follow-up Visit

My visit yesterday was not completely conclusive, but it did reveal 2 major items. The reason it was not conclusive was that 3 items on the complete cerebellar ataxia are still pending, the receipt of these particular results will solidify a diagnosis.

Most results that did come back were negative; however, the test results did reveal a pair of heterozygous POLG1 (DNA polymarase gene). This is what generates protein for the cell mitochondria to produce energy. By heterozygous, I mean that 1 of this pair is functioning properly; the other is not. 2 out-workings of this finding are PEO (progressive external ophthalmolegia), having to do with the eye, & parkinsonism, which simply means that there are some similar symptoms to that of Parkinson's disease.

The test result report does say that this finding is "of unknown significance." If 1 of the 3 pending tests turns something else up, that would be more likely the source of my problems, rather than the POLG1.

The other revealing thing during my visit was my MRI CD, which I had asked the hospital here to make for this particular visit. My neurologist told me that my cerebellum and spine are small, characteristic with people with cerebellar ataxia, and that instead of looking full and bushy, my cerebellum resembles a "winter tree." This is not reflected in the MRI report, so I am very thankful for the CD that my neurologist was able to view. I apologize for the size of the picture in the link (associated with this post title -- mouse over the words "Follow-up Visit" & you should see a hand instead of the butterfly or I bar; click there), but it was the only 1 I could find that shows what I mean. (By all means, let me know if you find a clearer diagram.)

I have another appointment scheduled there for 23 June, 2008, when we may hopefully know the pending test results. The plan then is to visit annually just to "check in" with my neurologist. Presently, no treatment exists for any of these hereditary conditions, but who knows .... at some annual visit, my doctor may be able to tell me about some newly developed treatment!

Sunday, February 03, 2008

Blood Test Results

For those of you who have been praying ... & wondering, no, I do not know my test results. I am presuming they went directly to my doctor in Hershey. I see him on the 12th of this month, so we expect to know the results then. Thank you so much for all your expressions of concern.

Saturday, December 15, 2007

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.

Wednesday, December 05, 2007

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.

Saturday, December 01, 2007

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.

Friday, November 23, 2007

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.

Thursday, November 22, 2007

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!

Friday, November 09, 2007

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.

Wednesday, October 31, 2007

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.

Saturday, September 08, 2007

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.

Tuesday, July 24, 2007

CTS

My carpal tunnel out-patient surgery is

scheduled for Wednesday, 8 August. YAY!!

Friday, July 13, 2007

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?!)

Thursday, July 05, 2007

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.

Wednesday, June 27, 2007

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.

Wednesday, May 16, 2007

Appointment Made

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

Friday, May 04, 2007

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!

Sunday, January 21, 2007

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.