The Back Door

When I returned home today I asked my hubby if I had given him the change from buying lunch today; since I had not I was a little worried. As I was changing my clothing from my office clothes to a Gellabiya (my common lounge dress from Egypt) I was trying to remember where I had put the money! It was more than $30 Singaporean Dollars (about $20 U.S.), and I couldn’t remember putting it in my wallet. Since I didn’t have a pocket in the clothing I was wearing I was just hoping I had not thrown it into the trash with the lunch waste. As I removed my brazier the cash fell to the floor! I had put it in my Boobie Purse! I could hardly stop laughing!!! Now I remember! When I went to meet my hubby for lunch today my hands were full, I couldn’t carry the change from the cashier in the cafeteria to his office. While I was in the elevator I had slipped it into my grandmother’s favorite purse for safekeeping until I returned to my office!!! I am still laughing about my new favorite fibrofog moment!
Many patients experience cognitive dysfunction (known as “brain fog” or “fibrofog”), which may be characterized by impaired concentration, problems with short and long-term memory, short-term memory consolidation, impaired speed of performance, inability to multi-task, cognitive overload, diminished attention span, anxiety, and depressive symptoms.
I have had a “brain fog” for years. In fact my family members know this special trait of mine as normal. Sometimes I forget a word I am searching for, even in midsentence. I regularly forget what I am doing, and I frequently prompt my daughter to remind me because otherwise I will forget. I once heard that rhino will stop mid-charge because he forgets what he is charging at! I feel that way at times.
I just recently discovered that these “episodes” are related to FMS. I always thought it was just me. I am new at relating this to fibrofog. I totally forgot to do something at work that is usually done on a daily basis; I have actually warned my new assistant that this will be a major part of her job description. I think I scared her off a bit when she asked in the interview, “what is enjoyable about this job?!”
Recently I came to the conclusion I must either learn to accept the thorn I have or live in pain.
“Life presents each of us with challenges that eat at us like thorns, briars, slivers, or a crown of thorns… I wish that I better understood all of the divine purposes in having to contend with so many painful irritants in this life. Lehi explained one reason: that we will appreciate and savor the goodness and loveliness of the world. (2 Ne. 2:8–13) Adam was told that the ground is cursed with thorns and thistles for our sake. (Gen. 3:17–18) Likewise, mortality is “cursed” with the thorns of worldly temptation and the slivers of sin so that we can be tested and prove ourselves. This is necessary for our eternal progression. The Apostle Paul explained, “Lest I should be exalted above measure … , there was given to me a thorn in the flesh.( 2 Cor. 12:7)” James E. Faust, “To Receive a Crown of Glory,” Ensign, Apr 2004, 2–7
I may not be cured of physical pain but I can be cured of the anguish I am feeling because of this thorn. I had reason to fall to my knees Saturday evening. I was in a place emotionally where no one could help, no one but The One. My prayers were heard and answered. He knows me and answers my prayers and continues to do so. Sunday came and as I readied for our church services I had a hymn going through my mind.
“More Holiness Give Me” is a hymn that I know well, I love its message. I often think of the words when I need strength. Its last verse is truly how I want to be.

More fit for the kingdom,
More used would I be,
More blessed and holy—
More, Savior, like thee.
Philip Paul Bliss

As I opened the hymnal to read the words of “More Holiness Give Me” during the sacrament service I also began reading the hymn on the facing page in the hymnal, “Be Thou Humble.”

Be thou humble in thy weakness, and the Lord thy God shall lead thee,
Shall lead thee by the hand and give thee answer to thy prayers.
Be thou humble in thy pleading, and the Lord thy God shall bless thee,
Shall bless thee with a sweet and calm assurance that he cares.
Grietje Terburg Rowley

I feel to rejoice in the “love Jesus offers me.” I do truly “know that my Redeemer lives.” “He lives to wipe away my tears.” “He lives to calm my troubled heart.” “He lives all blessings to impart. “
“The call of Jesus Christ to each of us is “If any man will come after me, let him deny himself, and take up his cross, and follow me.”(Matt. 16:24) Is it not time that we begin denying ourselves, as the Savior counseled, and surrender and master ourselves…? The question is not so much what we can do, but what God can do through us.” (James E. Faust, ibid.)
As I was teaching my class of seven year-olds my little China Doll said, “She’s not crying because she is sad, she is so happy.” That is how I feel, happy to, feel. I am happy to feel joy with the pain, happy with the sad. Because that means I am alive.

A letter from Kathy,

If you were born with healthy genes, you may know me but you don’t understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after years of mysterious illness. Because you didn’t know how sick I was, you may have called me lazy, a hypochondriac, or simply trying to get attention. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
FMS is not the newest fad disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

The many physical and emotional problems associated with FMS are not psychological in origin. This is not an “all in your head” disorder. However please remember, stress can affect the body, just as physical pain can affect the mind, causing stress and depression. If someone needs help in coping or dealing with depression, they should see a therapist or Psychiatrist, but it does not mean they are “crazy.” It may help you to find methods of coping!

In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is recognized as a disabling condition by the ARTHRITIS FOUNDATION, THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC, among others.

This syndrome may strike life-long athletes as viciously as it does couch potatoes. It can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME
(Keep in mind that these things may apply to some, not all of fibro patients)
My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real and very painful.

My fatigue – I am not merely tired, I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

My clumsiness – If I stomp on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So try to understand if I must decline certain invitations, or go home suddenly. I really can’t stand it.

My intolerance – Perhaps I can’t stand heat, either, or humidity. I may sweat, profusely. Some people cannot sweat at all and so the heat is even more unbearable! Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And, don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s “patients” suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro, not a cause of it. Some days I may just feel like giving up. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Every day stresses make my symptoms worse and can incapacitate me completely.

My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe Irritable Bowel Syndrome and lose weight.

My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.

My good days – If you see me smiling and functioning normally, don’t assume I am well. I am having a good day but I am not cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

My uniqueness – Even those who suffer from FMS are not alike. That means not every fibro sufferer may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Although I did not write the letter above it describes my life right now perfectly. I wanted to share it with all of you.

Kathy

*Authors’ note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one individual of the over 10,000,000 people with FMS, it represents all of them. It hopefully can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even a day in their shoes, or their bodies.
There are many letters of this type to be found on the internet. This one was written specifically for THE FIBRO WELCOME PACKAGE from www.fibrowelcomepackage.com

I am glad that I followed the instruction, “Just in case something goes wrong, make sure you have a backup.” I think everything is working again, let me know if you find a broken link or an image missing.

In my attempt to update my blog I may have damaged the code for my website. If you have been trying to access Penelope’s Pride Quilts and your screen is blank forgive me. I hope to repair it tomorrow before work.

I have loved my iPod touch! I just found an application that allows me to blog away from the computer. Welcome to my latest time saving technique. Now if I could only write my patterns here!

I upgraded the blog successfully. I am experimenting with a new layout. Tell me what you think.

Waiting for a Romantic River Cruise

Meanwhile you might enjoy a great photo my Mother-in-Law took of my sweet hubby and I!

I wonder how I can even explain the things I am thinking. Unless you live on the moon it is unlikely that you haven’t heard of Susan Boyle. I pulled the lyrics from the internet of the song she sang. I Dreamed a Dream, by songwriters, Alain Boublil & Claude-Michel Schönberg.
The character Fantine sings I Dreamed a Dream in the musical Les Misérables. Fantine is left alone, unemployed and destitute, she is the single mother of the main character Cosette when she is forced to become a prostitute to support her daughter. The musical is based on the 1862 novel Les Misérables by Victor Hugo. As a child I saw a mini-series of the story and challenged my father to a race to see who could read the book first; I don’t remember who won, but ever since then I have remembered the story.
While my son was in high school he was in the musical as the foreman. I loved watching him that day.

There was a time when men were kind
When their voices were soft
And their words inviting
There was a time when love was blind
And the world was a song
And the song was exciting
There was a time
Then it all went wrong

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted

But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
And they turn your dream to shame

He slept a summer by my side
He filled my days with endless wonder
He took my childhood in his stride
But he was gone when autumn came

And still I dream he’ll come to me
That we will live the years together
But there are dreams that cannot be
And there are storms we cannot weather

I had a dream my life would be
So different from this hell I’m living
So different now from what it seemed
Now life has killed the dream I dreamed.

Now as Paul Harvey would saw here is the rest of her story…

Susan Boyle was dealt an unexpected blow when she lost out to a group of young street dancers in the final of the British talent show that made her a global star.

I love the story of Susan Boyle, I hope that someday her dream will be realized.

I couldn’t believe that it could be so difficult to find the perfect dress. I never went to a prom in high school, and our oldest was attending an international British school during her Senior year so this is my first experience looking with a daughter for the perfect dress.
My Baby, my Madame Butterfly is such a blessing to share her teen years with. I love all of my children but I must admit it seems easier to deal with issues like the modesty of the dress with my baby girl. To my eldest defense I never had to even look out for this issue with her since she never had the option. I am just so grateful that I don’t have to play a mean Mom role and tell my daughters that they must buy according to my standards. The standards they keep are their own and they stand for it firm and steadfast.
It all started when Baby Girl went on the internet searching for the perfect dress. She looked for what seemed like weeks and when she finally found what she was looking for at the right price and from a store that could ship it to us I was thrilled.
The day the dress arrived she told me that it was fine and I just assumed it was. It turns out she thought she could shed the weight to fit into this impossibly small dress. The size she wears every day, in this dress was TWO SIZES too small. She had actually started trying to diet her way into the dress. She didn’t think she could exchange it! Once I saw the dress on her I knew it needed to go back. We called and ordered the exchange and since it was no longer available in black we ordered ‘Heather.’ What arrived yesterday was NOT Heather!

Chestnut brown was no going to cut it. I chatted with a co-worker about it and when she suggested pink and pearls to go with the milk chocolate brown I knew exactly what my baby girl would say. “I would look like an ice cream” she said, I KNEW IT! I knew that is precisely what she would say!!!
Well today we returned the brown dress. This afternoon we went to look for the perfect dress again. Remember it took her weeks to find this one online in the first place, and she had thousands to choose from. In the first shop, we found it!

A friend from work told me that she hoped the two failed dresses by mail would lead us to something even better. They did, a wonderful evening spent shopping with my baby, and a beautiful dress for her Senior Prom.

I like this look too.

Did you notice? I have created new headers for the blog. I have such a blessed life. I thought I would share some of the beauty with you. So visit often, I will change them whenever I can. I have included the original photos below, enjoy.