Maine United States of America
More pictures to come.
I can’t quite make out the date on that sign Jonathan-is that 1963 or 1863!!?? Just kidding! I’ll bet you’re the tall kid in the back row with the suit and bow tie! I love America!
Derek said this on May 1, 2012 at 4:50 pm | Reply
No Cookie, Im the Good Looking one in the first row wearing white pants. Notice how well starched they are. I had A.S. at this early age.Although I will be reaching 55 this Month the startch is no longer holding me up. LOL. Thank you,for getting the only picture I can share at this time. Will up get an up date as soon as I can.
Jon said this on May 5, 2012 at 3:44 am | Reply
Thank you so much for being a part of my vision.
Cookie Has A.S. said this on May 1, 2012 at 5:44 pm | Reply
Marti said this on May 4, 2012 at 5:30 am | Reply
🙂 back at you.
Jon said this on May 5, 2012 at 3:45 am | Reply
Thank You, Cookie Difficult on my story you know pretty much up to this date what A.S. affected me,my family. I will try hard later today. Being so Isolated with depression etc. I love you.
Jonathan Thurlow said this on September 16, 2013 at 6:03 am | Reply
To all the Faces of A.S. today marks a Special Day in all of our Hearts and share just how much Cookie Hooper Vision of A.S. that has met her starting goal of 1000 faces. There no words that can contribute on just how much this beautiful lady a year ago had a vision of A.S. Today Mark her 1000 faces on her wall of Faces of Ankylosing Spondylitis. She has put in so much into her vision. If you’re on the Faces,then you can and do honestly believe just how much of her time, energy,counseling us. Alway available to here our pains,what one can expect etc. However one thing Cookie does not .expect anything more than a Thank You. With her endless hours on Faces she has loaned (given) money of her own in helping other A.S.er’s obtain the meds that we must have. Speaking for myself I’ve had A.S. for over 45 years and recently was diagnosed six years ago. I’ve have been on all the biological meds and recently had to stop immediately. These biological drugs are trial medication for us. Yes it may slow things down but do realize that it can open up with other disease.
I’m so fortunate in meeting her online. Rule of a thumb is that one really doesn’t know for sure if one being scam or not. Well take it from me. Just chatting with her on line I have found a True Loving Lady and I have gained her Love. On bad day’s Cookie, would call and just to say hello and that she was thinking of me She has heard my tears and we shared different view in conversation and she would always come out being the winner. I guess what I’m trying to say Is that I share my heart to anyone that will accept it and help them on advices of A.S. Our conversations we never share another A.S.er information. We heard, we shared,we understood,and we express our thoughts and tears . I ask myself over and over and remind myself that I’m a grown man at 56 years young if I was being too emotional in tearing up on hearing some of Cookie;s private life conversations as well as mine.
If you happen to be a new Face with Faces you need to know fact as they are. Treatment does not cure A.S. it only slows the disease down. It’s responsible enough in having A.S. involved in trying to get to them. It’s also involves your eye’s and one hasn’t seen an Ophthalmologist A.S.P. you are just asking for trouble. Eyes are the first place they like to invade in you.
I would make sure that you indeed have A.S. Ankylosing means fuzzing of your spin and your neck. Spondylitis,means in short that Spondylothesis which means your blood lab results show that you are positive with the HL b27d gene. Testing positive the Biological meds is only working in preventing you in developing Ankylosing Spondylitis.
I’m in a stage that has been fortunate for A.S. into tackling my eyes in which I’ve have gone through surgery in both eyes. I was lucky that I proceeded in getting help immediately. My opthamologist from New York has saved my vision and today I can honestly say that I have a clean driver license with no restriction which can change at any time. I was all prepared at my Opthamologist prep and ready to start. My Doctor, stopped when he first examined both my eyes and stopped everything. I found myself kind of leary as he indicated to me that ” I like to receive the money from Medicare but his examination showed that if had follow through with my 2nd series of surgery that in doing so he indicated that I should pray to keep my vision as it is now.By doing the Surgery some nerve of something in that line that if it would leave a short cut would perhaps with in a month or two that the iritis and again that nerve of what ever he called it got injured tht all the fluid on the back side would slowly leak out and cause blindness. He use an example that when one pruchases a new model car that looks like the previous year additon why change? If no changes needed then it’s best to leve the looks the same. Like a Toyota Truck they look alike pretty much without changing the look. Why make changes if it works do not change it”. For my eyes was if they proceeded with the 2nd surgery. Excuse me I get myself typing as fast as my brain goes on full throttle. I tell people that when I type my fingers go faster then my brain and one thing I do is not
go back and make correction or pre-read what I may of type errors, misspelled words, my brain dictate to me and off I go.
Back to my story as I was saying they stopped all my Biological along with MTX.
Two months ago I had to have a eeg which is 24 wires onto your brain and you carry a small recording unit for 48 hours. I looked like a smurf afte they wrapped my head up. Well the testing came back pretty much what they were looking for and then scheduled me for another MRI with dye. Results were I have 5 new lesions which are active along with hardening of the arteries with calcium build up. With this diagnosis is like the lesions that are found in patients with MS or Parkinson Disease. Back in the mid 80 relocating back to Maine from our home in Florida testing in both states at that time revealed only three. The updated test is now at 5 more additional lesions.
My first Bio,was with enbrel which was not working in helping my eyes. Then I moved on to Remicade for 3.5 hour drip. After a year they found that my M.S. was active and is just about ready in attacking my body. Stopped ,then went onto Humira once a week.After lab results showed that I would do better on trying Simponi which did not help at all. Then they put me back on Humira once a week.The first time with Humira was one shot every two weeks an a increase on the MTX. Last labs testing two months ago resulted in stopping everything just continue with Alrex,and Turmoil (completely spelled wrong) twice a day.
My experience with these meds from day 1 up until two months ago has made a body change of myself. Going on the Biological meds I went from a size 32 waist almost to a 46.:( My Doctors said that I need to lose weight,”we ya I do but it’s not from eating” Since I stopped the meds I’m down to a 36 50 lbs lighter. I had a field day with them and had them look at this ugly dude. How are losing weight so fast? Stopping the Biological Meds. Another series of my A.S. I noticed little tiny bumps on my legs and my arms. I went to a Dermatologist and I believe 12 of them was removed and sent for a biopsy the results came back positive for skin cancer.This was done nearly 4 months ago. I have them coming back on the sites with the ones that were removed. Back at Christmas I was taken to the Hospital here in my ghost town for 3 days then they transported me 84 miles South at a medical center there. I had to have my 2nd heart cath.done. This was on the 24th of December. Previously on the first two the injected the instrument in my groin area. This pass on the 24 they went into my arteries using my wrist. I question them and they said they found that going in through with your wrist makes thing easier and being a Heart Medical Center I was with new technology this way worked the best.
I managed through it without any complication. Christmas eve being away from my family and friends knowing I would be their for at least 3 more days. Waking up on Christmas Morning I had the Best Santa Claus sitting right by my side. Yes Santa did come. I wa so pleased that my Mom,was sitting beside me and was planning on spending the night with me. Just seeing her for a visit and it was snowing. I asked her to go back home and spend your Christmas with my Siblings, Son,Granddaughter and my two Brothers and their spouse. She didn’t really want to leave me alone on he Christmas Birthday. I convinced her to go home and enjoy yourself before the traffic and snow condition didn’t look very good traveling.We exchanged a Hug and A Kiss and JVA and my Brother would leave and not spend the day and night. I remained hospital 3 days later transferred back to hooterville. Then I was readmitted to our local hospital for a additional week and spent it watching the Time Square Celebration. We had one hell of a storm. Knowing my Mom was home safe and family there with her in Celebrating her Christmas Birthday.
Well I did it again went on directly on how that scenario took place.
I should’ve just of said that where they injected me into my arteria on my right wrist the injection site has re-appeared.
Guess,I should’ve just made it easier for myself. When you live a life being so Isolated for 6 years and talking to myself and watching my wall paper falling of the walls.(kidding)
Another event occurred with taking these Biological Drugs is that it attack your gums and your teeth become a victim of breaking. I had to have 3 pulled,root canal on two others to keep two more broken ones.and had them build them up. Payment I went to Aspen Dental they wanted like 2 thousand just for pulling and cleaning. I was not able to find a dentist that would accept me due to they didn’t accept Medicare, or Cigna insurance for payment. I was so stubborn after trying to find a Dentist. If my Grand – Father,and a Uncle that both dentistes I would of been able to have them do the work. Looking back and seeing how dental care was provided in old school to being in a updated facility . I do not accept no for answer or services that need attention and Insurance Company need to pay. Medicare stated that there ruling and findings aren’t up to date. I went to the Capital of my State and showed them the article on teeth breaking due to the meds of A.S. Well by the time I reached home they phoned me and said that they found services that will cover my dental care,at no charge. On first phone conversation they stated there wasn’t and opening for two years. Well that blew me well and I let them have it good. I got a call back saying they were putting my up to the next opening which was in a weeks time. I grabbed it I get one visit a month in repairing building a few broken ones and the three removal. All I think they are to do is make me three different teeth and cement in my gums. And then the Hygenist will do clean them up nice and white, and I’ll have all my teeth. A.S. may have me but I’m not going to have them pulled as they wanted to do the cheapest way out. I wasn’t in agreeable with them and wasn’t going to settle for less. If I was a Cancer Patient (which is positive for skin) there no choice one has to make you receive the best that will work for you. That was my attitude . So I won that battle by being truthful. Questions look up what A.S. can and often does. I prevail on receiving 8000 dollar dental care I guess I have a little of Cookie in my I have a Vision on receiving care that A>S shares with us.
When I applied for SSD everyone even a lawyer told me I would not get accepted the first time around so prepare myself he didn’t like my answering back to him but I stay positive. I applied on May 17th and was granted SSD 4 months later.By law whether your accepted or not there is a 6 month waitng period in I wil receive bac pay form the May upt to January,there after I receive my SSD directly deposit on the 3rd of each month. If one goes to social security .org, there a list for adults with a disease that is granted immediately. MS,Lou Gehig,Blindness, I’m not quite sure exactly what all of the four are but I do know that after my application Ankylosing Spondylitis is now one of the top 5. Remember if you’re filing yourself be sure you go and read their codes. like E603 you must have documents on three major diagnoses that are backed up with your test results, MRI, Cat Scans lab work from your Rheumy etc. A note that your Doctors state he pulling you out of work doesn’t override SSD
You State job is to try to find something you can do. You can dead head flowers. Considers work..
My Dad was a Doctor and while I was experience back pain,and my walk was leaning forward Test,after Test. Make a long story short back in the 70 my Dad had a small life place on the heels of my shoes etc. Then he and my Mom, would each take a side and tighten my corset fitted back brace I wore 24-7 I wasn’t able to lean forward. I often wonder if it wasn’t for him I think I would fused in a position that would have my neck not being able to straighten up.
Cookie this is really how I wanted to share my A.S. story. Everyone pretty much start out the same way. I Jonathan Thurlow grant Cookie Hooper to correct dispose as she feel right.
To all the newly diagnosed Faces is a kind caring group of A.S.er’s. Never feel embarrassed in asking anything. We all started our Journey the same way as you. Males, have their concerns as do the ladies. One is always welcome to ask me a personal question.
My current diagnoses to date are : Diabetes,Fibro,Osteopenia,Osteoarthritis,Neuropathy, Uritis, (iritis) A.S. M.S. still waiting on the final decison.Depression,which we all go through.
My back and neck are fused. Can’t bend forward,Neck difficult in turning out into traffic.
This is no way is what I started to do,except ask Cookie a question. A>S>SUCKS it’s that simple If you notice of feel just not right have it checked.
I do anything if I could go back to work. Worked at the age of 15-49
If there is a single male that would like to move to Florida for the winter months contact me. You must have a active work resume, or on disability honest. Split cost in half have a safe vehicle to drive. I hate driving. leave after Thanksgiving and return back in May. My family’s home is being rented so that out. Campgrounds all over the place. RV, Airstream home. The area I’m aiming for is in Spring Hill Fla. Sorry not Cat. Wear short shorts and sell produce alongside of the road.
Jonathan Thurlow said this on September 16, 2013 at 9:33 am | Reply
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