Valentine’s Day Blip

Ahhh…The smell of chocolate is in the air. Nervous tension lingers in the minds of lovers near and far, as they laboriously mull over choosing that one perfect purchase. On Valentine’s Eve, sleeping retailers toss and turn as they anticipate bare shelves, where once droves of heart covered, paraphernalia lay. Some curious Valentines’ Day seekers will delve into the deep historical mysteries that surround this midwinter holiday. Come with me as we enter the world of abbreviated facts and legends dedicated to the, “Celebration of Love”. Indulge, as I toss out a few micro-morsels applicable to V-day.

According to church history, numerous early Christian martyrs were named “Valentine”, and they are honored annually in Rome on, February 14th. These include Valentine of Rome, Valentine of Terni and a third who was mentioned in early manuscripts. (This unfortunate man was killed in Africa.) Only one Valentine wins, “The Most Famous and Influential of all Valentines”. If you guessed Valentine of Rome, you were right! This priest and physician, married young couples in secret thereby violating one of Claudius’s II’s laws. The Roman emperor wanted his soldier’s attention fixed on war, not on their wives. Initially, the ruler enjoyed conversing with Valentine. However after an unsuccessful attempt was made to convert Claudius to Christianity, Valentine was thrown into prison. Before his execution, it is reported he performed a miracle by healing the blind daughter, of Asterius, his jailer. Church records state that St. Valentine did this through prayer and or by applying salve to the girl’s eyes. This miracle, prompted the jailer to convert to Christianity. Legend says that the night before he was to die, the man penned a note to his young patient, signing it, “From your Valentine”. Thus the very first valentine was written. In the morning Valentine was beaten and beheaded. Hypothesized date for his death: February 14, 269 A.D., He was buried the same day at the Via Flaminia, Italy.

The Love Connection – The first link between St. Valentine’s Day and love was credited to Geoffrey Chaucer. The famous writer penned, what is most likely the first Valentine’s Day poem, The Parliament of Fowls in 1383. An excerpt from Chaucer’s poem:

For this was on Saint Valentine’s Day,
When every fowl comes there his mate to take,
Of every species that men know, I say,
And then so huge a crowd did they make,
That earth and sea, and tree, and every lake Was so full,
that there was scarcely space For me to stand, so full was all the place.

Ever wonder how other countries celebrate….

Japanese Change Up – Japanese women feel obliged to give chocolates to all male co-workers, except on a Sunday. Men are expected to return gifts that are at least two or three times more valuable than the gives they received. Here’s the kicker – Returning a gift of equal value as the one received, sends the message that you are ending the relationship.

Underground Purchase – In Saudi Arabia in both years 2002 and 2011, religious police banned the sale of all Valentine’s Day items, for the day is considered a Christian holiday in the country. Shop keepers were warned to remove anything from red from view on this day. Thus a black market was created, causing citizens to retreat to back alleys for their roses and wrapping paper.

Sticker Mania! In Lithuania and Latvia – A friend or family member will, “sticker”  a loved one. These little signs of affection are placed on the face and clothing of the one admired.

Three facts for the road…

Number of Valentines sent each year in the U.S. – 1 billion

Oldest known Valentine – One sent by the Duke of Orleans, in 1415 to his wife after he had been taken prisoner by the English.

Expected amount of money spent on chocolate candy Valentine’s Day week -$345 million Dollars

My hope is that you’ve garnished something that interests you from this blip on Valentines’ Day. I’ll wrap things up with a holiday quote “He called me smarty-pants, and I think I’m in love.” – Author known:)

Sources:
Spiritual Living, Christian Faith CBNhttp://www.cbn.com/sp

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Teen Charlotte Stacey Hosting Fundraiser for The Royal National Hospital for Rheumatic Diseases

Thanks for coming by Charlotte! Tell us about yourself.

I’m 17 years old and currently studying forensic science.  I have Juvenile Idiopathic arthritis – Polyaricular Rheumatoid factor positive. I was diagnosed 26th July 2011 at the age of 16.  I live in Wiltshire with my Mum and Dad – I also have an older brother serving in the army, who lives in Reading.

Are their special challenges being a teen with RA?  What’s the biggest misconception about the disease?

Sometimes I feel like I’m missing out as a teen, when everyone seems to be having such a huge social life.  Frequently, I’m not well enough to join in or my hospital appointments take over much of my time, so I have less time to spend with my friends.  I feel left out and quite often isolated. It was also challenging when I was first diagnosed because I had my whole life planned out, all my dreams set and I was getting on with life doing everything I enjoyed then suddenly, these thoughts were stopped by my RA. Everything had to change.  I think the biggest misconception is that many in society don’t realize that young people can get arthritis.  They think that it’s the same as osteoporosis, the same type that that most old people get.  Much of society is unaware of the multiple forms of arthritis and believe those with it just have aching joints. In reality, many kinds are much more serious, like RA.  It bothers me that people think that if you don’t look disabled, you must not be ill.  Rheumatoid arthritis is, for the most part an invisible disease!

What do you do for fun when you’re not embroiled in working on homework?

Before I got arthritis, I enjoyed doing sport-Boxing and horse riding as they were my favorites! However these high impact sport prove very difficult with this disease now so I can no longer be involved with them.  I do enjoy some sports and I try to do some form of exercise, that is manageable with my disease. I also enjoy spending time with my friends, reading and just relaxing!

What’s your advice for other teens with RA?

Just keep going! Research the illness and surround yourself with supportive people. Keep talking to the doctors and tell them the specifics about your pain.  Take your medication and do your exercises, stay positive and move up and on!

I understand that you are spearheading a very exciting fundraiser for those with rheumatic diseases. Would you give us the details on this event? How can those who are interested in this  auction, contribute to it?

Yes, this will be the first of many I hope!  I am holding a raffle April 28th, 2012 , for the Royal National Hospital for Rheumatic Diseases in Bath, England. It is the hospital where I am treated. They do an amazing job and specialize in arthritis and similar illness. Many people being treated have to visit lots of different places but everything there is under one roof!  They provide physiotherapy and occupational therapy. The hospital even has their own hydro pool which are hard to come across around here. They also have a gym. Patients can go there on treatment courses where they are taught how to cope and manage with their illness, mentally and physically. Everyone there is really friendly and always go the extra mile to help. The rheumatologists there do a fantastic job and I feel that they really are not credited enough, so I want to draw attention to their work. I am doing this event to thank them for all they have done to help me.  They are truly wonderful people!  I feel it’s important to give something back to those at the hospital.  I am asking the public to donate prizes and so far I have been overwhelmed with kindness! Here are some of the donations that I have received for the raffle:

Pizza Oven – The Templestone
Free course of swimming lessons
Free Gym membership
Family Pass to Bowood
Adult and Child ticket to Cotswold Wildlife Park
Worn and signed Bath Rugby shirt
Signed Player photo from Liverpool Football Club
Signed player photo from Manchester United Football Club
Gift voucher for a hot air balloon ride
Nandos Restaurant voucher
A signed Jacqueline Wilson book.
A signed book by Carla Jones.
Jamie Oliver goodies Jamie Oliver book, Jamie’s Italian apron + bag

Also I have been contacted by the cosmetic company, Lush and they are hopefully going to donate some of their products . The Bath Theatre kindly agreed to donate some tickets nearer the date. A member of Ed Sheeran’s team who emailed me to say they would donate a signed photo. One of my followers on Twitter, has also kindly sent me a donation as well.  I still have a long way to go but the response has been amazing.

Where can my readers contact you to get the details on how to make a donation?

It is with regret that raffle tickets are not for sale for people in the USA because most of the prizes are for local places (gardens, parks, restaurants etc.) However if they wish to donate money, they can visit my “justgiving”, page.  http://www.justgiving.com/Charlotte-Stacey0 Or there is a link on my blog. From this site they can donate online or via text. If you do wish to find out more, it is regularly updated on my blog or you can see my twitter feed. For further information the public can email me at charlottestaceyy@yahoo.co.uk .

What direction will you be headed after high school to follow your dreams?

I want to study criminal psychology, so I shall hopefully continue to  a university to do this. I’m not too sure which university I wish to attend, however I want to stay close to home.  I have a few in mind such as Bristol University, Cardiff University and Derby (which is close to my Grandparents). I am also looking at staying on at college and doing a university level course. But I hope to study Forensic Psychology for this is the career I want to pursue. I had to adjust my dreams a bit due to my RA but it won’t stop me from following them.

Thank you Charlotte, for the inspiring interview.  I think it absolutely fabulous that you are making a difference in the lives of so many. Your gracious attitude is a example for us all.  I have no doubt you will raise awareness to rheumatic diseases, as well as raise a great deal of money to benefit your hospital!


For more information:

My twitter: @charlotte_stace
My blog: charlottesrajourney.blogspot.com
The Royal National Hospital for Rheumatic Diseases: http://www.rnhrd.nhs.uk/

Grandma’s Italian Sugar Cookie Recipe

Christmas Eve dessert would not be complete without these flavorful, moist cookies.  Grandma Veno and my Mother faithfully rolled out these family favorites year after year.   Mom became my culinary teacher and we continued this baking tradition.  Now I enjoy creating these treats with my kids.

  Anna Veno’s Sugar Cookies

5 cups of flour

1 1/2 cups of sugar

1 c. melted shortening

1 tsp. baking soda

1 tsp. baking powder

2 beaten eggs

1 c. buttermilk

1 tsp. vanilla

1 – 2 tsp almond extract

1/8 tsp. of salt

Pre-heat oven to 375 degrees. Melt shortening on stove or in microwave.  Remove and cool.  When completely cooled beat in sugar.  Mix dry ingredients in a separate large bowl.  Alternate dry ingredients with buttermilk, then mix thoroughly.  Roll dough on to clean floured surface.  Cut out desired shapes with cookie cutters. (1/8 of an inch thick) Decorate cooled cookies with buttercream icing and sprinkles.  Bake for 10-12 minutes.  Makes three dozen cookies.   Buon Natale!

Quick Buttercream Icing

3 1/2 cups of confectioners’ sugar

1 stick of butter

1 tsp vanilla

4-1/2 Tbsp milk

Mix all ingredients in a medium size bowl until well blended.

Batman and boating…

http://www.flickr.com/photos/leesscapes/6382480973/

The Largest Christmas Project on the Globe!

Imagine, due to a life of poverty, that your child has never received a gift of any kind, not from you, your family, or from anyone.  Now imagine your child’s face when a shoe box full of gifts is handed to him or her free of charge.  Who would do such a selfless act?  The answer is a volunteer for Operation Christmas Child.  A branch of the international Christian relief organization Samaritan’s Purse, Operation Christmas Child is the world’s largest Christmas project.

Operation Christmas Child became a part of Samaritan’s Purse in 1993 when Dave Cooke from Wales handed the project to the organization.  Samaritan’s Purse is based out of Boone, North Carolina and, although founded in 1970 by Dr. Bob Pierce, the current president is Franklin Graham.  The group’s purpose is, “to provide immediate, no-red-tape response to the physical and spiritual needs of individuals in crisis situations – especially in locations where few others are working.”  According to its mission statement, the organization has helped meet the needs of people who are victims of war, poverty, natural disasters, disease and famine with the purpose of sharing God’s love through His Son, Jesus Christ.

Fourteen countries take part in the giving of shoe boxes:  the United States, Canada, Australia, Austria, Belgium, Germany, Hong Kong, Finland, Ireland, the Netherlands, Spain, Switzerland, the United Kingdom and New Zealand. Approximately 8 million suffering children in more than 100 countries on six continents will receive these gift boxes.  The recipients include children in Sudan, Russia, China and other war-torn and poverty-stricken countries.  Several shoe box gifts have also been distributed in North America to Native American and Appalachian children.  One such distribution took place in the Alaskan town of Hooper Bay.  In August of 2006, the community was devastated by fire, and Samaritan’s Purse helped rebuild the town and handed out shoe boxes to those who lost everything.   OCC has donated a total of 88,666 shoe boxes to need children living in the United States, but its focus is international missions.

Empty  shoe boxes are packed year-round by compassionate individuals, families, schools, churches, civic clubs and other organizations in all 50 states and 14 countries.   Even U.S. Presidents Ronald Reagan, George Bush, Bill Clinton and George W. Bush have all packed an Operation Christmas Child shoe box with gifts for needy children.

Each OCC brochure includes shoe box labels, and donors can choose if they would like the box to be sent to boy or girl. Then they are to select the age of the recipient.  The ages range from 2-14 years old.   Also included in the brochure is a list of suggested gifts.  Some of the items include school supplies, candy, hygiene items, family photos, notes of encouragement and yes, even shoes.  Some of the volunteers’ favorite items include the following:  dolls, small cars, washcloths and games.

After the boxes are brought from local drop off points, they are inspected at six warehouses across the United States.  Next, they are shipped by cargo planes, trucks or sea containers to a variety of destinations.  In the remote location of Zimbabwe, one local form of transportation has been used – elephants.  Other colorful modes of transportation have included camels and dog sleds.  By using “EZ Give,” the online giving option on the Samaritan’s Purse Web site, donors can follow their box to the destination country where the boxes are hand-delivered by church leaders in that particular country.

The coordinator for the Southeastern Pennsylvania area, Lynette Dallman, has been with the organization for 3 years.  When asked what drew her to Operation Christmas Child with so many other charities to volunteer for, here’s what she said: “Operation Christmas Child impacts the lives of children and gives them hope.  It lets them know someone out there loves them.”  Lynette has traveled side by side these precious boxes on two occasions.   First she traveled to Panama in Central America and then to Burkina Faso, West Africa.  With a thrill in her voice, she recounts the exciting atmosphere. “I felt so honored to be handing out gifts that had been prepared for these children.  Just to look into their eyes and give them that knowing smile, lets you know you care about them.  Seeing them open their boxes, to hear delight in their laughter and to see their faces is such a joy.”

If you would like to be a part of this mission of giving, Samaritan’s Purse will be collecting gift-filled shoe boxes at more than 2,400 drop-off sites in all 50 states during National Collection Week, Nov. 14-21, 2011.  To learn more visit http://www.samaritanspurse.org.

Originally printed in The Country Register, October 2010.

Jackie Aitchinson’s Herculean Journey – Flourishing with Ankylosing Spondylitis

When I was a teenager, I begin having lots of aches and pains. The doctors labeled them as, “growing pains”. After having constant pain in spine I went from physician to physician yet, they could find nothing wrong, and they basically said it was all in my head.  My general practitioner believed there was a problem so kept sending me to different hospitals, different specialists.  Eventually I was diagnosed with Ankylosing Spodylitis, a painful, progressive, extreme form of inflammatory arthritis.  However by the time I received the correct diagnosis, my x-ray showed I had severe damage and needed fusion in my spine.  I was told the doctors had not been looking for AS, for it is generally a mans,’ medical problem!

It was the early 1970’s. By this time I was married and in my early 20’s. One of the things I was told was that my spine was not strong enough to carry children. For the next few years, I was continually taking painkillers and had several stays in hospitals with major flare ups.  The consultant at the Northern Hospital in Edinburgh, viewed my drugs. He expressed his concern and disgust that – a)I had never been referred to the hospital before, and b) that I had never been on anti inflammatory medications.  After Naporsyn was prescribed, the pain was held under control. Unfortunately, I spent undesired time in the hospital.

The next major event in my life occurred a few years later on New Years Eve. I decided I was not going to drink alcohol, as my friend were simply going around  to visit the neighbors in the wee village, we lived. While walking about, I slipped on the ice and was carried home by two drunk men. Fortunately, one was a fireman so knew how to carry me safely.  The next morning my general doctor, called and immediately insisted I got to hospital.  As it turned out, upon falling,  I had smashed a vertebrae. It was contained so no danger, so I insisted on going home, even though it was very painful. I was informed by my doctor that if I had been drunk, I would probably have been far more relaxed and therefore, would not have done much more damage to my spine.

The next incident that followed, involved one of my eyes left. My eye looked strange so I went to see my general doctor.  He found nothing, however two days later, he arrived at my door and insisted I go to the Alexandra Eye Pavilion in Edinburgh,   where I ended up staying for a week.  After reading up about AS, he  spotted a connection between my eye irritation and the disease.  I had developed iritis  and since it had not been treated promptly, it had become worse. I needed injections administered directly into my eyeball, for drops did not work. From then on I had iritis on average 3-4 times at least every year, as eventually, both eyes were effected.  Each time, I detected a flare, I went straight to the eye hospital, for I learned my lesson from the first incident. Thankfully, I only had two additional hospital stays due to my iritis  I got to be so good at recognizing the signs of the condition that, I ended up in a few arguments with nursing staff who told me there was no sign of iritis. After I insisted on seeing my doctor, he would confirm that indeed my eye was infected.  In over 30 years, I have only misdiagnosed myself once!  The doctors should by now read the bloody notes from previous appointments and listen to me! I am reactive to steroid eye drops, for it can cause the pressure to build up in my eye.  This pressure can turn into glaucoma. On one occasion I actually lost sight completely in one eye for a few hours and was rushed to eye hospital. The doctors were rushing around and accidentally gave me pills plus an eye injection. This combination made the pressure in my eye soar. My eyes are now very sensitive to light and I have lost some peripheral vision in one of my eyes and will most likely need surgery for this problem. I go to the eye hospital every few months for check ups.

A few years later,  someone pulled away a chair that I was about to sit on it.  I fell hard and the next day I was in great pain.   The doctor insisted it was a flare up of AS,or a bad bruise. (For I was not screaming and crying when I saw him) I told him it wasn’t, for I know my body.  However when I went to see my rheumatologist. He took one look at my face as I walked in, and sent me immediately to x-ray which turned out to be break number two.  The third time was five years ago as I bent down to pick up a bit fluff on the floor, I heard a crack. Same old same old. I pulled a muscle, torn ligament etc.. So my doctor sent me to a physiotherapist. It was an interesting journey crouched in the back of a taxi, for you have no idea the number of potholes in Edinburgh!! Anyway the physiotherapist sent me home as they refused to touch me, as I was in so much pain. They made arrangements for an x-ray, and insisted that they would need to come to me until they were satisfied with my situation, so I would not need to travel.   They found that I have osteoporosis.  This bone condition, combined with the AS, means I have to be very careful of falling over etc.

In December 1999 they my rheumatologist decided to operate on my back as I was becoming very badly bent over. This meant opening me up from shoulder to bum, breaking the spine in a couple of places, placing metal rods at each side of the spine and inserting hooks to pull everything into alignment. The operation was on a Tuesday and they put me in a plaster body cast on the Friday. (It should have been longer before applying the plaster, but it was coming up to Christmas and the holidays and they hurried the procedure along.  It was the worst thing ever!  If you can imagine, I could only sit up being held by several people and I was in extreme pain and experienced dizziness. The nurses placed a huge amount padding all around me.  It went from under arms, up to my throat, and then down to my hips.  I was given morphine injections whenever I wanted one. Then there was the scaffolding. I was carried over and laid on this structure, with pipes running under my knees and under arms. There were material bonded around my neck pulling my head into place and the same ones on my feet so my back was being pulled straight. When they finished the plastering, I was carried back and sat up as they had to make sure the plaster wouldn’t be too high to choke me, or too low to hurt me when sitting. Then laid me down on a trolley and sent to x-ray to make sure everything was in the right place. I was then put on a morphine drip and was in hospital for a month.

I had to learn to walk, to get washed without wetting the plaster etc.. After a few weeks had to go back to hospital for there was a black discharge, leaking out the bottom of the plaster, which my mum noticed when she was bathing me.   It turns out it was an infection because the plaster went on too early. The plaster  was taken off for less than a week and I had to say on the bed, in the wee room and couldn’t be moved. No further problems, but I had two further changes of plaster, each one a little lighter than the last, over a 10 month period. After all this, I was fitted with leather and metal strap-on body brace.  This switch was bliss, as I could take it off at night and when I bathed.  I needed to wear the brace for a year.

I began to suffer from extreme fatigue and when I saw my doctor, he sent me to the Western General Hospital in Edinburgh for tests. There they carried out my first endoscopy, to see what is going on in stomach. It was found I had a hiatus hernia and lots of lesions in my stomach due to taking the anti-inflammatory drugs over such a long time. Blood tests also found I have an under-active thyroid.   The thyroid and AS both have the same side effect – fatigue. I describe my continual exhaustion like, “Walking through water, all the time.” They also discovered that I had a lot of irritation in my stomach and colon due to the years taking anti inflammatory drugs, and that I was anemic. Again, this produced even more fatigue. So I was limited to taking, which really are ineffective for me.

A few years ago I read about a very new injection which had been used for similar conditions, called Enbrel.   I qualified to be given the medication so started with initially twice weekly self injection. The dosage was then doubled, so I could receive it once a week.  However the anemia was becoming a problem and I needed to be rushed several time to the emergency room for blood transfusions. The average blood count is 120-150 for a woman. At one point mine count was 50. My doctor gets excited of my count is in 3 figures!! Despite several endoscopes, colonoscopies and a camera pill evaluation, there was no obvious reason for the ongoing severe anemia.  It was determined that it is just attributed to my AS.

So daily I take painkillers, injections, thyroid pills, hernia pills, iron pills, calcium pills, osteoporosis pills and eye drops. I get a shopping bag full with each prescription, luckily as I don’t pay for any prescriptions!

There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look.  At times I have the feeling of being such a nuisance when out with friends, for I can’t walk far for long.  I don’t want to go out much for I always need to have a seat before long, so I longer have a social life. What I do enjoy is having friends over for visits. This too can be difficult, as I worry that I can’t manage to have my home as nicely as I’d like it to be.  My true  friends will understand my limitations.

The AS was also a contributing factor to the breakdown of my marriage. It is a very difficult condition for a patients’ partner to understand.  This is even more challenging when ones partner is young and active, as in my case.  Work life was also very difficult due to the constant medical struggles, and after the association I worked for merged with another,  they moved offices.  This meant hours of travel each way with three change of buses.  After three years of working with AS, I simply knew I couldn’t go on any longer and one day just got up and went home. My HR manager and my GP were very helpful and guided me through it all.  Thankfully, I signed off sick for a year which meant I could claim early retirement on health grounds. I remember going to see my GP with trepidation. After explaining the situation to him, he quietly said, “I can’t believe it has taken you so long to get to this point”.    He told me he admired my determination to work, and didn’t have any idea how I had managed to go on for so long. Well that was it, several boxes of tissues later we got organized. Again I think I was especially touched at this rare moment for AS patients are so used to people not really getting it.  We feel we have to defend ourselves from being considered lazy. Presently, I don’t get the old age pension as I am too young, and I could not have been able to do it with out the support of my partner an my mother.

I had major surgery last year, as I was finding it more and more difficult to breathe. I was taken off Enbrel while they investigated my chest/lungs. What they found was my entire stomach and part of my colon had moved through the hernia into my chest cavity and were squashing my lungs.  This happened because of my bent back.  The surgeon opened me up hip to hip in order to pull everything back into place and then stitch my stomach to the abdomen wall, so this will not happen again! Unfortunately while in for this procedure, I caught MRSA  and a throat infection.  I was also told they found my hernia did not close, as they couldn’t get me flat enough, so after all that still have a hiatus hernia!.

Another problem which has manifested itself this last year or so has been a twitch at my left eye, which became stronger and eventually moved down my face. This caused my lip to become a bit twisted up, looking as if I’ve had a stroke.  I was given Botox, several times but did nothing to really help. My doc suggested an MRI to see why this was happening. It was all arranged that I go in to have the scan of my head, however as the table part is very hard and flat so, It was too painful to lay on it.  So I must wait for them to come up with a better way of diagnosing this problem.

I got back on Enbrel in January, however I have been disappointed with the results.  It’s as though it’s not as effective as it used to be. I have also noticed my hands are very painful now, with the knuckles swelling, and some morning they are completely numb. The doctors are thinking perhaps it is carpel tunnel and my knees are also in pain while I am walking. Feet, ankles, and sciatic nerve are all in pain too.  My neck is bent very badly for I have to strain to look up the whole time I am walking.  This is very uncomfortable, as you can imagine.

My eyes have been much better lately, in respect of my iritis. Leaving work has been helpful in this way, as I am not on the computer all day long like I use to be.  Less stress from my job has also improved the situation, I believe.   I am also using two different very mild steroid drops in both eyes continually, as a maintenance program.

These are the “highlights” of the last forty years of my life. There are too many to go over each one of them for their have been many over the years .These days the depression is more disabling, partly because just so tired of it all and partly because in all honesty, I don’t have much of a life. As I said earlier, no social life in the evenings, too much is involved when planning transportation.  I am always  concerned if I will be guaranteed a seat.  I don’t think it’s fair to make plans with a friend and then  call off at the last-minute.  During the day,  my friends all work and my partner now works nights.  Even when I have visitors over, we have to be very quiet for my partner sleeps during the day.

I go out as often as weather allows usually with my Mum, as I am not too confident on my own any more. I think the effect of years of living with a chronic disease, is often thought of in terms of the effect on the body alone.  It also  equally affects the mind, family,  and friends of those living with the disease. Ones life becomes AS, as it controls every aspect of your person. People treat you differently than those who are healthy and it affects every decision you make.

I would like to make known that having joined various groups pertaining to AS, and by starting my own for group for AS’ Peeps, has been the best thing ever. I’ve met so many fabulous out there, who are a pleasure to know. These people are from all over the world. All  have a generous spirit.  They are the ones who listen to my concerns and support me.  We all exchange ideas, treatments, hopes and dreams, My life is much richer for these new friends even though I shall probably never meet them. But the big thing, the HUGE thing, is they all know,understand and accept everything you have to say because they LIVE IT.  I wish social media, would have around in the olden days when I started on this journey, for it would have detracted from the loneliness and isolation.

What a joy there has been in the new friendships made, because of this horrible condition! That has been one of the major factors in me getting more involved and active in spreading information about AS. When I hear all the different stories, (and many similar conditions), the huge delays in diagnosis I can understand what these patients are going through.  Some were diagnosed late, which allows the disease to do severe damage before any treatment has been given. This delay also allows the mental wounds to fester.  Those that don’t understand have hinted that we are simply seeking attention or have a mental illness. In my case if it was not for my doctor who doggedly kept sending me to specialist after specialist, until the final x-rays showed a very damaged spine.

About Ankylosing Spondylitis

The disease usually starts in ones teenage years and early 20’s.  Men are three times more likely to get AS than females. The disease usually starts with lower back, and early morning stiffness. It can also affect most joints, eyes, heart, liver etc as well.  Many people with AS take NSAID’s (non steroid anti inflammatory drugs).  The inflammation causes the pain. However in recent years, the treatment is a mix of these type of medication with muscle relaxants.  Other medications that are used are the newer biologics in the form of injections or infusions. These suppress the immune system and so stop the inflammation.

There are periods of extreme activity known as flares, which can last any amount of time.  There are periods of quiet, but usually the pain is somewhere in between.  AS causes the bones, in particular the vertebrae, to fuse together, which restrict movement.  (So some can end up like me, which is very bent over.) Patients frequently need fusing in the neck area. The other main symptom of the disease is severe fatigue. This can be a real problem as people can look well and so appear to be lazy! One day you can be severe pain, the next fine, but very tired. This again, is what people find hard to understand about AS. One doesn’t get ill, get treated and get well. Every one is different, and there is no way of knowing how you will progress, so the priority is to get pain management in place that works for you, and try to stay as mobile as possible.

I have now put on too much weight due to going a long time with little exercise. It is difficult to exercise with my breathing problems, recent surgery and the fact that it is winter here. I am hoping to get out and active soon and start a healthy diet. Hopefully this should help me shed some of the excess weight. The only exercise I am allowed to do is to walk. Having a fused spine and neck coupled with osteoporosis, this is the safest activity for me. I am not even allowed a massage!

A friend once told me my appearance, told the world, what kind of day I was having. When I am having a good day, I wear normal make up, all neat and tidy. Everything is in place – full face, hair, nails, jewelery and I wear a scarf.  If I am having a very bad day,  I represent myself in full camouflage mode! Do you know what? She was right!!”

I feel optimistic that with all the work being done to investigate the disease. The AS community is bringing much information to the attention of people interested and doctors, the new medication available, that those who have recently been diagnosed and those who will be will have a brighter future than those of us from all those whose journey started all those years ago. There is certainly much more support and information out there to enable them to be able to investigate and learn so they can make informed decisions.
Information from The National Ankylosing Spondylitis Society

– Ankylosing Spondylitis (AS) is a painful, progressive form of inflammatory arthritis.

– It mainly affects the spine but can also affect other joints, tendons and ligaments.

– Ankylosing means fusing together. Spondylitis means inflammation of the vertebrae. Both words come from the Greek language. Ankylosing Spondylitis describes the condition where some or all of the joints and bones of the spine fuse together.

– Entire fusing of the spine is unusual. Many people will only have partial fusion, sometimes limited to the pelvic bones.

– Other areas such as the heart, lungs and bowels can also be involved with AS.

– Inflammation occurs at the site where certain ligaments or tendons attach to the bone. This area of the body is known as, enthesis.

– The inflammation is followed by some erosion of the bone at the site of the attachment. This is known as, enthesopathy.

– As the inflammation subsides, a healing process takes place and new bone develops. Movement becomes restricted where bone replaces the elastic tissue of ligaments or tendons.

 – Continued inflammatory leads to further bone formation and the individual bones which make up your backbone (vertebrae) can fuse together.

– The pelvis is most commonly affected first. The lower back, chest wall and neck may also become involved at different times.

AS is a very variable condition. Some people with AS have virtually no symptoms whereas others suffer more severely. AS tends to affect men, women and children in slightly different ways. In men, the most commonly affected areas in men are the pelvis and spine. Other joints which may be involved are the chest wall, hips, shoulders and feet.  In women, the involvement of the spine tends to be less severe. The most commonly affected areas are the pelvis, hips, knees, wrists and ankles.

As a devoted advocate to informing others of the dangers of AS, she writes for various chronic illness blogs:

Masquerade of Words ( Spondylitis Blog Carnival) masqueradeofwords.wordpress.comA group committed to spreading information about the disease. This way the variations of the disease can be clearly seen.  This blog also educates friends and family of the many facets of AS.

AS Peeps and AS Standing Tall Together and  Thinking out Loud – jackie-aitchison.blogspot.com – Jackie created these groups to exchange ideas and offer support to those with the disease.

She is also a very active book reviewer.  For a book review, you can find her at Book Reviews by Jackie feline9-bookreviewsbyjackie.blogspot.com.