Archive for the Week 04: Hope Category

Hope By Dana

Posted in The Blogs By Dana, Week 04: Hope on August 1, 2011 by Cookie Has A.S.
I have faith that tomorrow they will find a cure
   for all those with joints~pain and stiff.
  And have confidence that all of us who dream, plan and wish
only hold in our hearts an optimism and a courage that is pure.
The likelihood that many of us could end up as cripples
   is a possibility that is high.
   Chances are that you and I
can expect a cane, then walker, then wheelchair~the effects that ripple.
I trust that you desire for more.
   For I yearn to dance!
   I again want to look forward to a second chance.
I want to at least be as normal as I was before!
I long to take endless walks,
   to not have to plan for rest breaks,
   to just anticipate~
For anything fun! And no longer expect that others will gawk.
If I can set one goal today,
   my wish is to set my expectations high.
   I promise to myself and others to aspire
to reach these in good faith.
I have hope that tomorrow they will find a cure
   for all those with joints~pain and stiff.
  And have hope that all of us who hope, hope and hope
only hold in our hearts a hope and a hope that is pure.
The likelihood that many of us could end up as cripples
   is a possibility that is high.
   Chances are that you and I
can expect a cane, then walker, then wheelchair~the effects that ripple.
I hope that you hope for more.
   For I hope to dance!
   I again hope to hope for a second hope.
I hope to at least be as normal as I was before!
I hope to take endless walks,
   to not have to hope for rest breaks,
   to just hope~
For anything fun! And no longer expect that others will gawk.
If I can set one hope today,
   my hope is to set my hopes high.
   I hope to myself and others to hope
to reach these in good hope.
In Hopefulness
Dana Morningstar


This is for the next MOWer’s blog carnival. I hope you all find what you need from this blog post!


Never Give Up Hope By Robert

Posted in The Blogs By Robert, Week 04: Hope on August 1, 2011 by Cookie Has A.S.

The last 18 Months have been the toughest that I have ever faced, starting with becoming single again; followed not long after that by getting diagnosed with Ankylosing Spondylitis (27th July 2010 will always be remembered.). On top of coping with the stresses and pains of dealing with the shocking news of being diagnosed with a chronic illness at what I consider to still be a relatively young age when I should really still be in my prime. The never ending credit crunch also continues to kick me when I’m down and work has been on a never ending downward spiral over the last couple of years as a result of those overpaid bankers and recent Government cuts have decimated the construction industry even further leading to a very high likelihood that within the next two months I will also be out of a job and feeling like I’m on the scrapheap at 33 years old. I have now put the house on the market and am waiting to see what the future may hold now that I have reached what surely must be rock bottom. Hope for a change in fortunes is all I have.

It has been all too easy to let feelings of doom & gloom pile up within me and succumb to the dementors, sucking all hope and happiness out of me. Every day has been a little bit more difficult than the last to remain positive and fight off the doubts swirling through my head. When you start every morning in pain and discomfort it can be really difficult not to start everyday in a miserable mood before you even leave the house. Throwing myself into the spondy community has been very therapeutic for me at a time when everything is crashing down around me. The hope that all the hard work with people coming together from across the globe with a common goal, leading to raising awareness of Ankylosing Spondylitis and many other Invisible diseases gives me hope. Hope that fellow sufferers no longer feel as alone in the daily fight against their own bodies as we are all dealing with many of the same difficulties. This is a way of taking my mind off things and gives me a hopeful feeling and a positive energy boost at a time that I need it to wade off some of the negatives.

As a great inspiration and fellow spondy Kelly says, I’m hurting but hopeful that things will improve…things can’t really get any worse, can they??. My personal view is that once you hit rock bottom, the only way is up and my hope is that the next twelve months will be a journey of positive emotions and many challenges will be overcome. I want to cling on to positive feeling and emotions and turn my current frown upside down.

I am hoping that when I see my new Rheum next week, she will get me started on TNF treatments as after a year of trial and error with various medication combinations, I am bored of seeing little to zero change in my pain levels. I hope against hope that I can see a reduction in pain in my future.

I’m also hoping that with the failure of the business and as a consequence, having to sell my house I can turn this dire situation from a negative into a positive opportunity and use it as a sign to re-evaluate what I want out of life and find a new venture be it here or a perfect time to give up on this Country and look further afield and move abroad where I can improve upon the current work-life balance (hopefully I’ll get to see the sunshine once it a while as well) and find a combination that works well with my 2nd job of dealing with Chronic illness. I really do hope this turns into a blessing from above and give credance to the fact that everyting happens for a reason.

I will write a follow up to this in a few months, once decisions have been made and opportunities pursued that will hopefully set me on the road to a more positive

Hope – Just a dream? or achievable? By Ricky

Posted in The Blogs By Ricky, Week 04: Hope on August 1, 2011 by Cookie Has A.S.

Living with a chronic illness can be both mentally and physical debilitating. This we all know, and live daily. Hope is the one thing that keeps us going, especially through the tough and difficult times. Nothing in life is simple, with chronic illness not just becoming a health problem, but impacting on work, family, and our social lives. It’s no wonder why hope is the one thing that keeps us sane. As I am one of those rather irritating people that is analytical and scrupulous, I have come to wonder what hope is? Is hope just something we desire? Or is it something we can achieve? Well I have decided to break down what hope means to me:

H – Happiness

This is probably obvious, but whether we do/do not have our condition/s, all any of us want is to be happy? It would be rather inhuman to want to be unhappy after-all, no? For some of us the only way we can ever be happy is when we are not suffering. As Ankylosing Spondylitis (A.S) is not curable, I know with a confident degree of certainty that I will always suffer in some shape or form. If this was how I truly felt then hope would never be achievable for me, it would just be a dream/ideology. Thankfully I don’t fall into this group. As I write this, as much as I hurt, as down as I can get, I still am happy despite my A.S.

O – Opportunity

What is life, but one big series of opportunities? If we are ever going to achieve what we hope for (whatever it may be), we need the opportunity to do so. Some opportunities we can make for ourselves, some we can’t. For instance you can’t start a new drug treatment if you don’t visit the doctor, can you?

P – Positivity

This word I feel encompasses what hope is the most. Being positive, even if you have every reason not to be. Nothing worth having is achieved through negativity. If you have ever wondered how powerful positivity can be, then if you haven’t already done so check out my archived PMA article (once you have finished reading this one of course).

E – Expectation

Expectation is “the act or state of looking forward or anticipating”. To me expectation is a basic form of hope. Like hope, expectations can be realistic or unrealistic, achievable or unachievable, and in essence they both mean “what we want”.

So if we take a Positive Expectation that is going to make us Happier, which we can achieve through the Opportunities we have, what do we get? P.E.H.O!!! Which can also mean H.O.P.E.  ;o)

Is hope just a dream? Is it heck!!

Go make it happen!

Hope I Can Blog (Write) About Hope By Meloni

Posted in The Blogs By Meloni, Week 04: Hope on August 1, 2011 by Cookie Has A.S.

I understand why some people get to the place of hope being lost or having no hope.

Each day a person that suffers from a chronic disease has questions of hope;

-I hope I can make it today with no pain
-I hope I can endure the pain

-I hope I can get a good nights rest
-I hope that since I’m not sleeping, I won’t suffer tomorrow

-I hope that I can make the plans with friends
-I hope my friends will understand when I cancel

-I hope I can clean my house today
-I hope nobody stops by because my house hasn’t been cleaned in days

-I hope I can do the laundry
-I hope everyone still has undies since I don’t feel like doing laundry

-I hope I can make it to the grocery store today
-I hope we have something in the house to eat because I just don’t feel like moving

-I hope they can get my disease under-control
-I hope they find a cure

-I hope I can walk up those stairs
-I hope nobody is behind me, cause I’m going slow

-I hope I don’t need a cane
-I hope I don’t end up in a wheelchair

-I hope my spine doesn’t fuse
-I hope my spine fuses straight and not stooped over

-I hope they don’t ask about my disease
-I hope they do ask about my disease (knowledge is key)

-I hope they don’t say, oh, it’s arthritis
-I hope they don’t say, but you look great and at least it doesn’t affect your organs

-I hope my family understands…
-I hope that I do NOT pass this to my children!

ASer’s have many of these type thoughts everyday! We live with feelings of guilt, regret, anger, frustration, sadness, but we also live with HOPE. If I don’t have hope then what do I have? What is a future with a chronic disease without hope? What is life, without hope? What is MY future without hope?

I have ankylosing spondylitis, but it does NOT have me.

H. O. P. E. By Cookie

Posted in The Blogs By Cookie, Week 04: Hope on August 1, 2011 by Cookie Has A.S.

I HOPE: You enjoy Hearing Our Personal Experiences

I HOPE: When people read these blogs we have written, they will do so with a loving heart, compassionate soul and an open mind.

I HOPE: That Ankylosing Spondylitis becomes as familiar as the word arthritis.

I HOPE: That for whatever reason each of us began this journey it’s accomplished for you.

I HOPE: One day people will remember how determined we were to making a difference.

I HOPE: The medical field will be able to find a cure for Ankylosing Spondylitis.

I HOPE: The medical field will become familiar with the symptoms of Ankylosing Spondylitis.

I HOPE: That each of us achieve all of our goals and dreams and succeed in our challenge to raise Ankylosing Spondylitis awareness.

I HOPE: That one day people will say Ankylosing what? Due to the fact it is a disease that is on it’s way out.

I HOPE: That one day I will hear commercials about Ankylosing Spondylitis.

I HOPE: That I am the only one in my family to ever get Ankylosing Spondylitis.

I HOPE: That one day you will be able to say I made a difference in your life.

I HOPE: That one day we all reach that point in Ankylosing Spondylitis where the pain is minimal.

I HOPE: That one day I will be able to meet my Ankylosing Spondylitis friends and family.

I HOPE: That one day my family will care enough to read my blogs concerning my struggles and fears with Ankylosing Spondylitis.

I HOPE:  When people read our stories they will for that moment of time, walk in our shoes.

I HOPE: One day spell check will include the words ANKYLOSING SPONDYLITIS. I am getting tired of clicking ignore!

I HOPE: That one day each of us, will look in the mirror and love who we are.


Hope By Kate

Posted in The Blogs By Kate, Week 04: Hope on August 1, 2011 by Cookie Has A.S.

For about four or five years I spent my whole life living with hope and optimism. Then the last three years or so I lived in the darkest depths of despair and agony. I had lost my hope. I had lost my stability and piece of mind. I had to go off my lithium for my bipolar and at about the same time was diagnosed prematurely incorrectly with psoriatic arthritis. (two doctors later and two years later I received my ankylosing spondylitis diagnosis)

I have finally just regained my stability and my optimism again. There were times during those dark moments were I thought for sure I would never make it. I thought I would never take another breath nor get out of bed. Times when I would think ending my life was a far better choice. Hope is so important when you are ill. It can get you through the roughest, toughest moments when you would think there is no fight left in you. Hope is a lifeline for me, I have always needed it to survive my toughest times. It has gotten me through hospitalizations as well. When I have hope in my heart I feel so entirely full of life. Full of positivity and happiness. That’s how I feel now and it makes my physical and emotional pain lessen too. I can’t tell you how wonderful it is to be full of hope again. If I could bottle it up and give it away I certainly would..

“Hope is the feeling that the feeling you have isn’t permanent.” ~Jean Kerr


Hope By Jackie

Posted in The Blogs By Jackie, Week 04: Hope on August 1, 2011 by Cookie Has A.S.
What do I hope:
I hope that the new people being diagnosed with AS have more luck than us oldies
I hope that the fabulous work being undertaken by so many new groups to spread the word will help for AS to be understood better 
by families and friends, and that doctors will take more interest
I hope that the time taken to diagnose AS will become much shorter as the word spreads
I hope that if people get on the TNF drugs early enough they will halt the progress of AS, both in terms of pain and disfigurement
I hope that knowledge of AS will spread to the people who decide about benefits payable, about disability payments, and early retirement so there doesn’t have to be the continual struggle to prove what AS is.
More personally
I hope that I have reached the end of the road as far as flares go, being so very bent the pain from just being twisted is enough without more flares
I hope I manage to have no more breaks
I hope my eyes don’t get any worse
I also hope that everyone with AS takes the plunge to join one of the fabulous support groups. It will change their lives to have friends and support around them, where ideas and tips are passed around and where you are never alone. The best of which, is of course, MOW!!!