Monday, October 28, 2013
My Strict Diet (formerly known as my celery diet)
It's been a while, eh?
Friday, November 12, 2010
Discovery
BTW, my earlier update about my calves being constantly tight & my having more ballance problems is no longer valid.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
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
MERRY CHRISTMAS, EVERYONE!!!
Sunday, December 20, 2009
min zamaaaaaaaan!
- DETERMINATION
- celery
- water & strong, black decaf
- increased activity (walks with my rolator, etc)
- 1 solid "square" meal a day
- 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
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 ...
Friday, December 12, 2008
Merry Christmas from the Bookamer home!
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 ...
Thursday, November 13, 2008
CTS Post Script
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!
Saturday, November 01, 2008
P.T.
Two new things she told me about are that ...
- ... she will set me up with a weighted pen, weighted spoon, etc, so that my brain can easier assess the location of these utensils.
- ... she will get me hooked up with an ataxia newsletter, which would be helpful identifying resources, etc.
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
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
Sunday, August 17, 2008
Dustpan for Jesus
"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.
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.
Time passed and Mr. Bush was preparing to take another evangelistic journey into the north country where Dust Pan's village lay.
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!
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!"
Friday, July 18, 2008
Postponed Visit
In defense of my doc, though, I should mention that he scheduled this follow-up appointment ...
- ... to shift our annual visits to summer in order to avoid snow storms like the one that coincided with our last appointment.
- ... 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.
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
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
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
Saturday, December 15, 2007
Jason's Funeral
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
http://www.adn.com/news/alaska/crime/story/9495726p-9406642c.html
http://www.adn.com/news/alaska/crime/story/9495949p-9406887c.html
Saturday, December 01, 2007
holding pattern ...
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
Thursday, November 22, 2007
IBS?
Friday, November 09, 2007
Answered Prayer!
Wednesday, October 31, 2007
2nd Opinion
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:
- SCA is hereditary.
- SCA is a degenerative condition.
- 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:
- I would know how this would progress -- what to expect.
- I would be able to identify if certain problems I have are related to the disorder or a separate issue.
- 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
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
Friday, July 13, 2007
good news/bad news...
(Like our "new" van?!)
Thursday, July 05, 2007
Vertigo
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...
Wednesday, May 16, 2007
Friday, May 04, 2007
Cross-Roads
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.
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.