Showing posts with label USA: Maine. Show all posts
Showing posts with label USA: Maine. Show all posts
Wednesday, June 19, 2019
Monday, January 1, 2018
A.S. Face 1858: Leonard Trask
A.S. Face 1858: Leonard Trask
June 30, 1805 – April 13, 1861
June 30, 1805 – April 13, 1861
Leonard Trask: The Wonderful Invalid
The First American Description of Ankylosing Spondylitis
I have waited a long time to add this Face to the website, 6 years, 2 months and 24 days to be exact.
The reason I chose this number to honor him is because in 1858 a book titled A Brief Historical Sketch of the Life and Sufferings of Leonard Trask The Wonderful Invalid was printed and published by David Tucker. It eventually became the official first written documented case of Ankylosing Spondylitis in the United States of America.
In my research about Ankylosing Spondylitis many years ago I came across the information about Mr. Trask who was called the Wonderful Invalid.
I ordered his book and read it within an hour, a lifetime of suffering and devastation documented in 48 pages, it was both inspiring and heartbreaking to me.
This is a small part taken from the original book:
In 1858, David Tucker published a small booklet which clearly described a patient by the name of Leonard Trask who suffered from severe spinal deformity subsequent to AS.$[10]$ In 1833 Trask fell from horse exacerbating the condition and resulting in severe deformity. Tucker reported that “it was not until he [Trask] had exercised for some time that he could perform any labor” and that “his neck and back have continued to curve drawing his head downward on his breast”, evidence of inflammatory disease characteristics of AS, and the hallmark of deforming injury in AS. This account became the first documented case of AS in the United States.
I want to share a poem that Mr. Leonard wrote that was included in the book.
To My Patrons
Ye favored thousands of our happy land,
Who, blest with health with peace and competence,
Before your fellows hale, erect can stand,
Enjoying all the sweets of ever sense.
While your fair brows, you heavenward raise with ease,
Beholding all the bustling scenes around,
And me, unshapely, bow’d with dire disease,
My vision stinted, all my frame unsound.
With thankfulness, with gratitude and praise
To Him, whose watchful eye is over all,
Your hearts, your mind, your voice to Heaven raise,
That my misfortune did you not befall.
And while your limbs are hale and fee from pain,
Health blooming, your companion, night and day,
At poverty repine not, nor complain,
Though gold and riches lie not in your way.
Would you, who thirst for wealth or power desire,
When you my uncouth form and sufferings see,
Your longing to gratify, retire
From the hale circle, and exchange with me?
Would all the gold, which California yields,
Tempt you to take my form, and aching head?
Or all the wealth that reaped on India’s field?
If not, reflect, how poor I am, indeed!
Would you, whose coffers gold and silver fill,
Whose income yearly, hundred thousand tell,
Choose rather, if the choice were at your will,
Become like me, or all your wealth expel?
If you all wealth would banish from your sight…
Would health and form preserve, what e’er they cost;
By this crierian, exercised aright,
You may appreciate what I have lost.
I would not, friends, excite your mirth or glee,
Nor down your cheeks induce the tears to roll,
Unless those tears again could gathered be,
To the calm fountain of the tranquil soul;
And there excite the peaceful, quiet mind
To resignation, placid, sweet content,
And gratitude to heaven, good and kind,
Who, to your lot, has better fortune sent.
Yet, think not, while affliction’s cruel hand
Presses me down, and holds unyielding sway,
That I, a human, living wonder stand,
Stoic in soul, with heart as cold as clay:
With joy, I often look to the heaven above,
Thank God for mercies and benignant care,
Rejoice, that through his kind and tender love,
I, still so many earthly blessings share.
I thank Him that the hearts of men are kind,
That while I live and wander here below,
So many sympathizing friends I find,
Such friendly treatment, too, where’er I go.
I’m thankful, too, that woman’s angel heart,
The same in every clime, in every land,
In sorrow’s vestry, always acts its part,
To raise the object with a tender hand.
Though gay and sportive, as a fairy queen,
How soon she melts at the scenes of bitter woe!
Down her fair cheeks, my eyes have often seen,
The crystal fountain of hear heart, so flow.
I’ve seen her in the village—in the town,
In crowded streets, and marked the silent tear.
I’ve met her sigh, but ne’er her haughty frown,
Her words unpleasant, never greet my ear.
In towns or cities, little children kind,
Treat not the cripple scornfully nor rude;
Among them, many precious friends I find,
With minds and hearts, like little angels good.
They look with wonder, pity and surprise,
Nor insult, to my sorrows, ever add;
From them, no shouts of ridicule arise;
Their kindness, too, has oft my heart made glad.
Through many a seeming long, and tedious year,
Such torture racked my mortal, shattered frame.
That grateful, thankful—even joy sincere
I feel, at relaxation of my pain.
In resignation there is joy and peace,
Whate’er my lot, whata’er my form may be;
Faith, Hope, and Charity those joys increase,
And soothe my mind in dark adversity.
In that celestial bright and happy land,
Beyond the vale of sorrow, pain and tears,
Where I, erect in glory, hope to stand,
In faith and hope, the future bright appears.
I thank you kindly, sympathizing friends—
Your favors, your kind patronage implore;
On these alone, my earthly weal depends—
Farewell: — and peace be with you evermore.
Leonard Trask
Tuesday, December 12, 2017
A.S. Face 1818: Daniel King
A.S. Face 1818: Daniel King
Sugarloaf Marathon (May 2017)
As I drove home on that spring day in 1997, the words I’d just heard took hold. I was crossing the Fore River Bridge on I-295 in Portland, Maine, when a simple, straightforward sentence put an exclamation point to years of frustrating, escalating pain and confusion: “You have been diagnosed with ankylosing spondylitis.”
I kept thinking to myself, ‘Arthritis? Me? I have a chronic disease? My vertebrae are fusing?’ After years of debilitating, misunderstood and increasing pain, there it was. The truth.
In October of 2017, I completed the Maine Marathon. It marked the second consecutive year of finishing three marathons.
The journey from symptoms to diagnosis to medication to endurance running was as long as it is surprising.
The disease had left me with fusion in several locations in my spine and decreased my mobility. Playing with my children on the floor consisted of getting on all fours and letting them climb on me. Anything else was too painful. Bumping into an unseen object or stepping into a hole sent me into convulsions. Breathing deeply was impossible. Sneezing was impossible.
The mobility in spine is and was severely compromised. I perfected the art of putting on a pair of socks without being able to reach down far enough with both hands. I had resorted to wearing Velcro sneakers and slip-on shoes to avoid tying shoelaces. The list goes on.
There were numerous times prior to diagnosis where I suspected, something’s really wrong here. The cause of the pain and stiffness was misunderstood for years. To this day, people still ask me about my, “bad back” and “sciatica.”
When I was finally referred to a rheumatologist in February of 1996, Dr. Larry Anderson ordered an exhaustive set of tests, including X-rays. Front, back, sides. Trying to position myself on the X-ray table was so painful, it brought me to tears, as well as the technician.
By this time, physical activity was a far-flung notion. Whenever I attempted to break into a jog, two or three steps were about all the pain would allow. My diaphragm screamed, ‘Stop.’
After years of drug trials, I began Enbrel injections in 2003. As I recall, the relief began fairly quickly and some light activities became palatable and more enjoyable. Breathing wasn’t as painful. At some point, I noticed that I wasn’t waking up at night from the pain as often. I still wake up, but not every single time I turn.
About seven years ago, my daughter, Doria, was getting ready for her high school basketball season and wanted somebody to run with her. I told her I’d give it a try.
I hadn’t worked out seriously or consistently since my mid-20s. I wasn’t expecting much.
At first, a quarter mile was all I could muster. Doria would run ahead. I’d walk for a while and try again when she looped back in my direction. After a little while, I could do a mile. Soon, she was practicing with the basketball team and I was on my own.
I started to feel some benefit and kept going. There’s a roundabout down the street from our house, exactly one mile. I vividly recall the euphoria of making it to the roundabout and back without stopping. I could run. I could breath and my legs were responding.
Then I noticed a couple friends posting road race photos on social media. It looked fun. Doria and I registered for the Jingle Bell Run in December of 2010 in Freeport, Maine. A fundraiser for, drum roll please, the Arthritis Foundation.
I was hooked for all the right reasons. I was feeling better. The road and trail running community is supportive and inclusive of all ability levels. And, yes, it stirred a little competitive juice. In short, I smelled fun and benefit.
After a year or two, I contemplated running more regularly and increasing the mileage. It felt as though the running was counteracting the many side effects of the disease and medications, most notably fatigue, headaches and focus. I consulted my rheumatologist, Dr. Brian Daikh, asking if such a physical load was advisable. His answer was simple: “If you feel up to it, go ahead.”
From there, I methodically, upped the ante. The 5K turned into a 10K, then 10 miles, then a half marathon. The more I ran, the better I felt. Physically and mentally. There are times when it hurts and hurts a lot, but it pales next to what AS has done. I’m always aware of the pain and the side effects. There are good days and bad days. For the most part, though, my body has held up.
At my annual checkup, we celebrated the triumph of three marathons completed in 2016. Since then, I added three more: Sugarloaf Marathon (May 2017), Last Man Standing Ultramarathon (September) and the Maine Marathon (October). Next year, I have plans for my ninth and 10th marathons.
Dr. Daikh said the combination of treatment and running has slowed the progression of AS for me. When I see photographs, though, sometimes I’m frustrated. It’s as though I’m looking at somebody else because of what AS has done to my posture. My doctor tells me to keep the focus on maintaining the mobility that I have.
When I run, I forget AS for a little while. When I run far, that amounts to hours.
Sugarloaf Marathon (May 2017)
As I drove home on that spring day in 1997, the words I’d just heard took hold. I was crossing the Fore River Bridge on I-295 in Portland, Maine, when a simple, straightforward sentence put an exclamation point to years of frustrating, escalating pain and confusion: “You have been diagnosed with ankylosing spondylitis.”
I kept thinking to myself, ‘Arthritis? Me? I have a chronic disease? My vertebrae are fusing?’ After years of debilitating, misunderstood and increasing pain, there it was. The truth.
In October of 2017, I completed the Maine Marathon. It marked the second consecutive year of finishing three marathons.
The journey from symptoms to diagnosis to medication to endurance running was as long as it is surprising.
The disease had left me with fusion in several locations in my spine and decreased my mobility. Playing with my children on the floor consisted of getting on all fours and letting them climb on me. Anything else was too painful. Bumping into an unseen object or stepping into a hole sent me into convulsions. Breathing deeply was impossible. Sneezing was impossible.
The mobility in spine is and was severely compromised. I perfected the art of putting on a pair of socks without being able to reach down far enough with both hands. I had resorted to wearing Velcro sneakers and slip-on shoes to avoid tying shoelaces. The list goes on.
There were numerous times prior to diagnosis where I suspected, something’s really wrong here. The cause of the pain and stiffness was misunderstood for years. To this day, people still ask me about my, “bad back” and “sciatica.”
When I was finally referred to a rheumatologist in February of 1996, Dr. Larry Anderson ordered an exhaustive set of tests, including X-rays. Front, back, sides. Trying to position myself on the X-ray table was so painful, it brought me to tears, as well as the technician.
By this time, physical activity was a far-flung notion. Whenever I attempted to break into a jog, two or three steps were about all the pain would allow. My diaphragm screamed, ‘Stop.’
After years of drug trials, I began Enbrel injections in 2003. As I recall, the relief began fairly quickly and some light activities became palatable and more enjoyable. Breathing wasn’t as painful. At some point, I noticed that I wasn’t waking up at night from the pain as often. I still wake up, but not every single time I turn.
About seven years ago, my daughter, Doria, was getting ready for her high school basketball season and wanted somebody to run with her. I told her I’d give it a try.
I hadn’t worked out seriously or consistently since my mid-20s. I wasn’t expecting much.
At first, a quarter mile was all I could muster. Doria would run ahead. I’d walk for a while and try again when she looped back in my direction. After a little while, I could do a mile. Soon, she was practicing with the basketball team and I was on my own.
I started to feel some benefit and kept going. There’s a roundabout down the street from our house, exactly one mile. I vividly recall the euphoria of making it to the roundabout and back without stopping. I could run. I could breath and my legs were responding.
Then I noticed a couple friends posting road race photos on social media. It looked fun. Doria and I registered for the Jingle Bell Run in December of 2010 in Freeport, Maine. A fundraiser for, drum roll please, the Arthritis Foundation.
I was hooked for all the right reasons. I was feeling better. The road and trail running community is supportive and inclusive of all ability levels. And, yes, it stirred a little competitive juice. In short, I smelled fun and benefit.
After a year or two, I contemplated running more regularly and increasing the mileage. It felt as though the running was counteracting the many side effects of the disease and medications, most notably fatigue, headaches and focus. I consulted my rheumatologist, Dr. Brian Daikh, asking if such a physical load was advisable. His answer was simple: “If you feel up to it, go ahead.”
From there, I methodically, upped the ante. The 5K turned into a 10K, then 10 miles, then a half marathon. The more I ran, the better I felt. Physically and mentally. There are times when it hurts and hurts a lot, but it pales next to what AS has done. I’m always aware of the pain and the side effects. There are good days and bad days. For the most part, though, my body has held up.
At my annual checkup, we celebrated the triumph of three marathons completed in 2016. Since then, I added three more: Sugarloaf Marathon (May 2017), Last Man Standing Ultramarathon (September) and the Maine Marathon (October). Next year, I have plans for my ninth and 10th marathons.
Dr. Daikh said the combination of treatment and running has slowed the progression of AS for me. When I see photographs, though, sometimes I’m frustrated. It’s as though I’m looking at somebody else because of what AS has done to my posture. My doctor tells me to keep the focus on maintaining the mobility that I have.
When I run, I forget AS for a little while. When I run far, that amounts to hours.
Friday, May 19, 2017
A.S. Face 1779: Nicole Bryant
A.S. Face 1779: Nicole Bryant
My Story:
I have had joint pain my entire life, it started in my wrists and ankles as a small child whenever it was cold or rainy. We were told it was growing pains. I stopped growing at age 12, but the pain never did. Around 15 I started having lower back pain, but assumed I had done something to it during cheerleading or volleyball practice. I joined the Navy when I was 19, during my schooling the hard chairs caused an immense amount of lower back pain, when PT didn’t take the pain away I was accused or making it up in order to be discharged, so I decided to just live with the pain. By age 23 I had 3 children under age 2, so exhaustion and back pain were attributed to that. During this time my hands and feet began to ache more and more and now my hips began to ache as well. My grandmother had RA, so doctors would run blood work checking for that and X-rays to check for osteoarthritis every year which were always negative. As my pain increased without anything showing up on these tests I was told that I was “too young to have arthritis” and made to feel like it was all in my head. As a military family we moved every few years, this meant a new opportunity for a doctor to figure out why I was always so tired and in so much pain, unfortunately it never seemed to work that way. When we moved to Maine I decided not to bother trying, there’s only so long that you can be told it’s all in your head before you start to believe it. I was surprised when my new doctor read my file and asked me to tell him what was going on. He referred me to a rheumatologist who ran tons of blood work and found that I was HLA-B27 positive, and diagnosed me with AS. Until seeing my rheumatologist I had no idea that RA and osteoarthritis weren’t the only forms. My diagnosis came in 2010 at age 34, 19 years after my lower back pain started.
Nicole Bryant
Maine, United States of America
My Story:
I have had joint pain my entire life, it started in my wrists and ankles as a small child whenever it was cold or rainy. We were told it was growing pains. I stopped growing at age 12, but the pain never did. Around 15 I started having lower back pain, but assumed I had done something to it during cheerleading or volleyball practice. I joined the Navy when I was 19, during my schooling the hard chairs caused an immense amount of lower back pain, when PT didn’t take the pain away I was accused or making it up in order to be discharged, so I decided to just live with the pain. By age 23 I had 3 children under age 2, so exhaustion and back pain were attributed to that. During this time my hands and feet began to ache more and more and now my hips began to ache as well. My grandmother had RA, so doctors would run blood work checking for that and X-rays to check for osteoarthritis every year which were always negative. As my pain increased without anything showing up on these tests I was told that I was “too young to have arthritis” and made to feel like it was all in my head. As a military family we moved every few years, this meant a new opportunity for a doctor to figure out why I was always so tired and in so much pain, unfortunately it never seemed to work that way. When we moved to Maine I decided not to bother trying, there’s only so long that you can be told it’s all in your head before you start to believe it. I was surprised when my new doctor read my file and asked me to tell him what was going on. He referred me to a rheumatologist who ran tons of blood work and found that I was HLA-B27 positive, and diagnosed me with AS. Until seeing my rheumatologist I had no idea that RA and osteoarthritis weren’t the only forms. My diagnosis came in 2010 at age 34, 19 years after my lower back pain started.
Nicole Bryant
Maine, United States of America
Saturday, April 25, 2015
A.S. Face 1510: Lynda
A.S. Face 1510: Lynda
Hello! My name is Lynda and I have Ankylosing Spondylitis (AS) on top of Ehlers-Danlos Syndrome (EDS) and Cushing’s Syndrome. Both AS and EDS cause me to have chronic pain and very susceptible to infections due to the medications I have to take to attempt and slow down the damage. After prolonged use of steroids before figuring out the underlying cause of a lot of my symptoms was AS, I developed Cushing’s. The treatment for Cushing’s? Yep, steroids. In the photo, you can see me, my medical alert service dog “Ditzee May” and my baby ball python “Harley”. Ditzee lets me know when I have an infection, which comes in handy because her early warning lets me get medical attention before I end up sepsic. She also can detect when my blood pressure is going to drop before I feel it. Our first ambulance ride together happened when my BP dropped to 80/26. She let us know… they got me some water, took her outside to potty before the ambulance got there and had us ready for transport. Ditzee loves her Harley, by the way… likes to give her kisses.
Maine, United States of America
Monday, July 7, 2014
A.S. Face 1332: Marnicka Silvesan
A.S. Face 1332: Marnicka Silvesan
My name is Marnicka Silvesan
I don't have a long story but here it is.
I'm 35 now and was diagnosed at age 30 with A.S. I've suffered since my first flair at age twelve. I've had a lot of xrays a few MRIs with no prevail on my pain. At age thirty I was having a hard time walking the pain was over whelming so my primary doc sent me to a pain doc and he said degenerate bone disease my doc sent me to a arthritis doc who tested me for the gene which came back positive. I've been struggling off and on. Been on bio meds and anti inflammatory meds but still suffer.
I make the best of every day which is all we really can do with this horrible pain.
Many blessing to those who fight every day to live.
Maine, United States of America
My name is Marnicka Silvesan
I don't have a long story but here it is.
I'm 35 now and was diagnosed at age 30 with A.S. I've suffered since my first flair at age twelve. I've had a lot of xrays a few MRIs with no prevail on my pain. At age thirty I was having a hard time walking the pain was over whelming so my primary doc sent me to a pain doc and he said degenerate bone disease my doc sent me to a arthritis doc who tested me for the gene which came back positive. I've been struggling off and on. Been on bio meds and anti inflammatory meds but still suffer.
I make the best of every day which is all we really can do with this horrible pain.
Many blessing to those who fight every day to live.
Maine, United States of America
Wednesday, February 19, 2014
A.S. Face 0932: Dale
A.S. Face 0932: Dale
Hello, my name is Dale, I’m 55 yrs old and was diagnosed with severe AS in 1976/77, I had many problems with my neck and back beginning around age 12, the doc said it was growing pains. The eventual diagnosis was a hard pill to swallow for a strong young man at age 18, it’s impossible to describe my feelings about how devastating this disease can be both physically and mentally, I believe you have to experience it – to know…
The new biological drugs didn’t come soon enough, my spine is completely fused, I also have the usual problems with my shoulders and hips as well as a 20 year battle with iritis -
All I can say is don’t abandon your dreams, if you give them up – it’s over…
Maine, United States of America
Monday, February 3, 2014
A.S. Face 0555: Maddy
A.S. Face 0555: Maddy
Maddy is five years old and was diagnosed with AS in June 2012. Maddy’s mother has Ankylosing Spondylitis and when Maddy continually complained of pain in her knees, legs, back, and neck she asked her pediatrician if it could be likely that Maddy had AS as well. Maddy had the blood test and it came back positive for the HLA B27 gene. She will be going to see a pediatric rheumatologist in October. So far she has been taking tylenol and switching off and on between that and motrin. Her pain is becoming more frequent and painful the last few weeks. She has also begun complaining of not seeing well, and headaches.
As her mother, I feel so bad that my daughter has inherited my horrible illness, but with me by her side offerring support and being her advocate, I will be sure she receives the best possible care.
Maddy and Her mother
Maine United States of America
Saturday, January 4, 2014
A.S. Face 0490: P.C.
A.S. Face 0490: P.C.
The beginning stages of my A.S. didn’t start until after I turned 21 years old. I credit the gene, HLA-B27 to have become active due to trauma. My mother died abruptly when I was just 17, then I was involved in a work related accident where I was life flighted to Syracuse University Hospital, I was only 19 and I had just graduated high school! I pulled through but I should’ve died! Then shortly before my 21st birthday my father died in a scuba accident! After I turned 21 I had major pain in my S.I. joints! I could barely tie my shoes let alone put them on for work! I wasn’t diagnosed until I was 26 yrs old. Through all those years the doctors just said I wasn’t getting enough exercise or some other B.S. excuse! I was in construction as an electrician so I know I was getting plenty of exercise! It was a battle with doctors to try and find a diagnosis! It was as if they didn’t believe me and were playing games with me! I wanted to go nuts, I felt like I was because I couldnt find a health care professional to believe me! Finally in april of 2011 I backed my things and moved to Maine. The heath care in Maine was great! The doctors and 2 specialists figured me out in 2 and a half months! It was a relief to finally know what was wrong with me! After all the years of pain and struggling, I knew I had A.S… I never heard of it until my rhumey diagnosed me but he educated me about it and how my life will be and put me on Humira! I didn’t like the side effects from the drug but for the relief I was more then willing to try it! It’s been a long journey up to now. A lot of pain and frustration mostly! I ended up losing everything from A.S. including my career! I didn’t know what to do so I sought for guidance! I was told my many healthcare professionals and family to go for Social Security Disability! I did and it was a loooooong battle! It took 2 yrs to finally win my case infront of a ALJ! The judge agreed to for my approval but she didn’t’ even understand why it had to go as far as it did with me sitting in front of her which disgusted her! I now live with my brother in an apartment we share! Its been a long journey up to this point but now I have peace and I can enjoy life! Thanks for reading! Take care and positive thoughts to all!
Maine, United States of America
The beginning stages of my A.S. didn’t start until after I turned 21 years old. I credit the gene, HLA-B27 to have become active due to trauma. My mother died abruptly when I was just 17, then I was involved in a work related accident where I was life flighted to Syracuse University Hospital, I was only 19 and I had just graduated high school! I pulled through but I should’ve died! Then shortly before my 21st birthday my father died in a scuba accident! After I turned 21 I had major pain in my S.I. joints! I could barely tie my shoes let alone put them on for work! I wasn’t diagnosed until I was 26 yrs old. Through all those years the doctors just said I wasn’t getting enough exercise or some other B.S. excuse! I was in construction as an electrician so I know I was getting plenty of exercise! It was a battle with doctors to try and find a diagnosis! It was as if they didn’t believe me and were playing games with me! I wanted to go nuts, I felt like I was because I couldnt find a health care professional to believe me! Finally in april of 2011 I backed my things and moved to Maine. The heath care in Maine was great! The doctors and 2 specialists figured me out in 2 and a half months! It was a relief to finally know what was wrong with me! After all the years of pain and struggling, I knew I had A.S… I never heard of it until my rhumey diagnosed me but he educated me about it and how my life will be and put me on Humira! I didn’t like the side effects from the drug but for the relief I was more then willing to try it! It’s been a long journey up to now. A lot of pain and frustration mostly! I ended up losing everything from A.S. including my career! I didn’t know what to do so I sought for guidance! I was told my many healthcare professionals and family to go for Social Security Disability! I did and it was a loooooong battle! It took 2 yrs to finally win my case infront of a ALJ! The judge agreed to for my approval but she didn’t’ even understand why it had to go as far as it did with me sitting in front of her which disgusted her! I now live with my brother in an apartment we share! Its been a long journey up to this point but now I have peace and I can enjoy life! Thanks for reading! Take care and positive thoughts to all!
Maine, United States of America
Friday, January 3, 2014
A.S. Face 0441: Kristie Pelletier
A.S. Face 0441: Kristie Pelletier
My name is Kristie Pelletier
I was diagnosed in 1997.
The first time I missed school because I couldn’t turn my head, I was 7 years old.
I had many times that AS was affecting me when I look back now, knowing;
long before I was sick enough to be diagnosed. That’s the problem, you have to get very sick to end up diagnosed.
Jesus is the reason I am sustained through it all.
He holds me and loves me and it is enough.
There is no suffering that He has not already overcome, and one day I will too.
He holds me through it all…ALL… through it ALL. This place with all of you who KNOW…
you all KNOW what is encompassed in that word… ALL. I don’t have to tell you or try to explain it.
There is comfort in that too.
I have a sister who also has AS.
It is terrible, and w!onderful to share this with her.
Terrible, because I long for her to be well.
And wonderful, because we have been there for eachother and we both truly KNOW…
My life is filled with much joy. I have joy in my husband who is always loving and kind, and in my children, and now grandchildren.
That is now.
It has not always been that way.
The joint repair has begun… I take humira to keep my eyes… I have had chronic uveitis and scleritis that won’t adequately respond to steroids. I have lost some vision, I keep pushing on. I have a great family and a very active, albeit twisted, sense of humor. We Laugh A LOT!
I am thankful for all of it. I have learned perseverance, strength and compassion… things truly learned only the hard way.
this is me with my grandson Johnny
and this is me with my husband Pete
this is my husband and me with our pup Bo. He is much bigger now.
He is a guaranteed walk for me. Better than any gym membership.
Maine United States of America
Wednesday, January 1, 2014
Friday, December 13, 2013
A.S. Face 0145: Pat Elliott
A.S. Face 0145: Pat Elliott
My Dad had AS and unfortunately it was too late for him as the medicines had not been discovered yet. He was bent over with his nose closer to the floor than the ceiling. I watched him suffer for years never thinking I would not only feel his emotional pain but his physical pain. He never complained. NEVER. I would have trouble walking the mall in my twentys and could not understand how my friends could keep on going. I went along for years until I had to address what what was going on with me. I had a knee replacment four years ago. What a blessing. My hands started to have problems along with my spine and back. I do not have the marker in my blood but my Rumotoid doc treated my Dad and knew how to diagnose me. There are days when it hurts to even touch anything I had to give up my job as I was a visitation supervisor for children trying to reunite with their parents. I could not only sit for the visits but if I missed anything that would impact a childs life I would never forgive myself. My husband is awesome. He sees my pain and encourages me to rest. That is abouth the only thing that helps. This year for the first time I am having trouble wrapping Christmas presents and my friend is going to help. I have learned to live with my limitations but I am so angry that I can’t do the things I love. Snowmobing, unless I am a passenger. I want to drive. Jetsking, cant hold the gas and staying up at night. I know I am extremely lucky to have such a supportive family. I am taking humira injections, methotrexate pills, celebres and many more other meds. I can’t take cortizone as. they give me the shingles. I am not willing to slow down with my activities and it just makes me want to do more and outrun what is happening to me. One day at a time.
Maine United States of America
A.S. Face 0139: Cathy Bryant
A.S. Face 0139: Cathy Bryant
I have had A.S. for going on 15 years. I also have two sisters who have A.S.
Maine United States of America
Sunday, December 8, 2013
A.S. Face 0123: Steve Rodimak
A.S. Face 0123: Steve Rodimak
My name is Steve Rodimak I have had several surgeries and was diagnosed with As in 1998. I was a maintenance director for 20 years and had to go on disability after my back fusion surgery in 2005.. I have always had a passion for the outdoors and ice fishing is my thing..My Family has always been there and took care of me after my surgery. I have the best parents and I am blessed to have them. I started this children’s non-profit in Maine and N.h to give back and keep me going,, I needed a purpose in life.. I went thought the poor Steve thing and depression, I have been divorced , lost a beautiful house and job . I now have a girlfriend who understands and has patience with me. she is my go to and gives me strength. I always thought I would be alone but I feel things happen for a reason,Each day is a new day for me. I try to do everything i can when feeling good, I wanted to share an article that was written about me and my icefishing program .This illness is a challenge and nobody would understand it and probably never will. You can either start living or start dyeing. cookie i was hoping you could reword this and make it a better article for your faces of as. thank you and i hope this is something you could use . i am not very good at writing but wanted to share.Steve Rodimak, ProStaff
IceFishing4aCause
80 Country Club Road
Hollis, Maine 04042
(207) 776-1303
www.icefishing4acause.org
Below is inclued an article:
Ice fishing tournaments and derbies continue to grow in popularity here in the Northeast, due mostly to demand. Some of the events are highly regulated with strictly enforced rules, while others are more relaxed. Some are geared towards a specific species and others offer prizes for a wide variety of fish. And then there is IceFishing4Acause.
IceFishing4ACause is the brainchild of Steve Rodimak. Steve started ice fishing in the mid eighties, at the urging of a friend, and soon became hooked on the sport. He quickly became involved with local ice fishing derbies, volunteering to help out on a regular basis. And then in 1998 he started to suffer from some health issues, including hip replacement surgery. It was shortly afterwards that he was diagnosed with Anklyosing Spondylitis, an inflammatory disease that causes pain, stiffness and fusion of the joints. For the next several years he would be in and out of the hospital, undergo extensive back surgery, and he was, for the most part, unable to pursue the sport he loved.
It was in 2006 that Steve spent most of the year in and out of rehab that he met a group of kids and started talking to them about ice fishing. They were interested and urged him to once again become involved with the sport, and Ice Fishing 4 a Cause was born; an ice fishing program for kids and people with disabilities.
In Steve’s words; At first, I started with small groups of children and many one-on-one lessons. I now host and help several charity derbies in the State of Maine and NH. Some of our derbies have 1500 to 2000 people attend. We do a big charity derby in Limington Maine every year to raise money for a children’s cancer retreat called Camp Sunshine. At the events, we do raffles, casting contests and jigging clinics all free of charge for kids. Last winter, we started helping the State of NH’s “Lets Go Fishing” program, where we assist with field trips for some elementary schools. I have several volunteers that help and a girlfriend who supports me and helps with my website. Jiffy Ice Drills, Frabill and other sponsors help us out and we work hard attempting to locate funding so we can continue to operate our events.
For the upcoming season, IceFishing4ACause has five derbies planed in Maine and New Hampshire and you can bet Steve Rodimak will be hard at work making sure everyone has a good time. For more information, visit www.icefishing4acause or you may email Steve at rodimakfish@yahoo.com
Maine United States of America
A.S. Face 0122: Brittney Brown
A.S. Face 0122: Brittney Brown
My name is Brittney and I am 26 years old. I am a wife, a mother to
three children ages 7, 5, and 3, work as a CNA at a hospital and
nursing home, and full-time student going for a nursing degree. I was
diagnosed in August 2011 with Ankylosing Spondylitis. I had never
heard of this disease before and was nervous. I did a lot of research
and found many of my symptoms and problems I have had over the years
all fit the description of AS. I’ve had numerous GI problems, scope
surgeries, ovarian cysts, problems during pregnancy with my siatic
nerve, liver shutting down, etc.
three children ages 7, 5, and 3, work as a CNA at a hospital and
nursing home, and full-time student going for a nursing degree. I was
diagnosed in August 2011 with Ankylosing Spondylitis. I had never
heard of this disease before and was nervous. I did a lot of research
and found many of my symptoms and problems I have had over the years
all fit the description of AS. I’ve had numerous GI problems, scope
surgeries, ovarian cysts, problems during pregnancy with my siatic
nerve, liver shutting down, etc.
I was run over at the age of 9 and I attributed all of my back and hip
pain over the years to that accident. I had broken my pelvis and
tailbone and figured this is why my bones ached so bad. I had been
seeing an osteopath doctor for about a year who would manipulate my
back and hips and try to get the pain to decrease. The pain however,
was just getting worse and worse. Finally he sent me for x-rays and
showed inflammation around my SI joints. He then decided sending me
for a nuclear bone scan was the next step to see if there was more
going on. The nuclear bone scan showed inflammation around the SI
joints and inflammation along my spinal cord. I was sent to my primary
doctor with this new information and she ordered a test to check for
HLA-B27 and it came back positive. So there it finally was-a diagnosis
of Ankylosing Spondylitis. Now where did I go from here? I had never
heard of this disease before all I knew is that it was very painful
and had caused me to be out of work for three months already at this
point due to the severity of the pain. She put me on a high dose of
anti-inflammatories that did nothing to help. My diagnosis was in
August 2011 and it is now November and I still have received no real
help or answers on how to manage my AS. I
saw a Rheumatoid Arthritis doctor in October and he sent for an MRI
and did blood work. My inflammation level was sky high, my ALT (liver)
functions were high (probably from over doing it on tylenol to try and
help with the pain), my BUN was high, and my MPV was low. The doctor
actually told me these were all normal, but I got a copy of the blood
test report myself and discovered all of this out after leaving his
office. The MRI showed no inflammation and just a cyst that I have on
my right ovary. The RA dr said I do not have AS and told me my
problems were womanly. I have been struggling to find a RA dr in this
area who I can see. I know my problems are not “womanly”.
pain over the years to that accident. I had broken my pelvis and
tailbone and figured this is why my bones ached so bad. I had been
seeing an osteopath doctor for about a year who would manipulate my
back and hips and try to get the pain to decrease. The pain however,
was just getting worse and worse. Finally he sent me for x-rays and
showed inflammation around my SI joints. He then decided sending me
for a nuclear bone scan was the next step to see if there was more
going on. The nuclear bone scan showed inflammation around the SI
joints and inflammation along my spinal cord. I was sent to my primary
doctor with this new information and she ordered a test to check for
HLA-B27 and it came back positive. So there it finally was-a diagnosis
of Ankylosing Spondylitis. Now where did I go from here? I had never
heard of this disease before all I knew is that it was very painful
and had caused me to be out of work for three months already at this
point due to the severity of the pain. She put me on a high dose of
anti-inflammatories that did nothing to help. My diagnosis was in
August 2011 and it is now November and I still have received no real
help or answers on how to manage my AS. I
saw a Rheumatoid Arthritis doctor in October and he sent for an MRI
and did blood work. My inflammation level was sky high, my ALT (liver)
functions were high (probably from over doing it on tylenol to try and
help with the pain), my BUN was high, and my MPV was low. The doctor
actually told me these were all normal, but I got a copy of the blood
test report myself and discovered all of this out after leaving his
office. The MRI showed no inflammation and just a cyst that I have on
my right ovary. The RA dr said I do not have AS and told me my
problems were womanly. I have been struggling to find a RA dr in this
area who I can see. I know my problems are not “womanly”.
I get bad muscle spasms in my neck and back, there are times when my
entire left side goes numb, weak, or tingly on me, I have severe
stiffness in the morning and at night, my sleep is very disrupted due
to the pain, and I get really bad migraines. There is a lot more going
on here and I need answers. I have an appointment next week with a
different RA doctor and am praying they will give me some answers. AS
is a confusing and scary diagnosis, and I need someone who can help
me. I will not let this disease defeat me. I have not been able to
return back to either job as a CNA yet, but I am still in school
pursuing a nursing career. I was recently accepted in to the National
Honor Society, Phi Theta Kappa, and I plan to continue on with my
education. AS will not defeat me or define me! I define myself!
entire left side goes numb, weak, or tingly on me, I have severe
stiffness in the morning and at night, my sleep is very disrupted due
to the pain, and I get really bad migraines. There is a lot more going
on here and I need answers. I have an appointment next week with a
different RA doctor and am praying they will give me some answers. AS
is a confusing and scary diagnosis, and I need someone who can help
me. I will not let this disease defeat me. I have not been able to
return back to either job as a CNA yet, but I am still in school
pursuing a nursing career. I was recently accepted in to the National
Honor Society, Phi Theta Kappa, and I plan to continue on with my
education. AS will not defeat me or define me! I define myself!
West Paris, Maine United States of America
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