A.S. Face 0962: Daniel S.

Face 962Daniel 968

Daniel: Washington

“My name is Daniel  from New York, NY I am 32 years old and I recently have been diagnosed with A.S. and was shocked mostly because I never heard of the disease.

It all started 2 years ago when I was working as a dog walker. I woke up one day with blurred vision in my left eye. I was like “what the hell” but I still needed to go to to work to walk rich people’s dogs. I walked into a pharmacist and basically asked “Hi I have blurred vision in my left eye what do you recommend for that?” and they said “ugh You have to see a doctor for that.” then I said “well do you have eye patches?” and they pointed to a aisle.

Anyways. I buy a eye patch and go to work. Needless to say some of the dog owners were shocked to see me walk in wearing an eye patch. They were more surprised that I acted very casual. That’s because I’m the type of person who doesn’t want to make a big deal out of weird situations. I just go on with my business.

But I am also stubborn. I just kept buying over the counter medicine and putting on eye drops that did nothing to my eye. So a friend was like “Dude you should go to the hospital”. So I finally did. Long story short I was using lots of eye drops. Then in the same month. I started to feel extreme pain in my left knee. I had no idea why. I thought it was my new boots? So I got rid of the boots and that didn’t help. But guess what? I was still working as a dog walker and my left knee was killing me and getting worse. So I bought a knee brace and went to work! To make things worse I was giving 2 gigantic dogs to walk and lots of stairs to walk up to. So I felt like a Pirate at this point. I’m wearing an eye patch and I’m limping everyone. My friends like to say “argh” when they see me.

My boss thought I was getting lazy because the dogowners were complaining that I was taking too long to walk their dogs. Eventually I had to quit that job. My eye did heal and the knee pain went away when I started to put heat pads on it. Time goes by. I had failed relationships, moving on, started doing stand up comedy in NY, getting tattoos etc. Then slowly out of nowhere I started to get stiff. I first assumed that I’m just out of shape and need to get to the gym. I had no idea it was the beginning of A.S.

Last year I went to the beach with my brother and his wife and my mom. My sis in law was pregnant at the time. So she was feeling a different type of pain. So we are both sharing the pain. My brother wanted to go to on a roller coaster and when I was younger I loved roller coasters. I love speed. It’s fun. So we go on the roller coaster and for the first time ever I did not enjoyed the roller coaster. My whole body was jerkin. Tears came out of my eyes. My brother was surprised. We both thought that I was just getting older and my body was just not used to roller coasters anymore.

So to make me feel better my brother recommended that we go on the Tea Cup kid’s ride. So I agreed and wow we were both shocked that even the Tea Cup kid’s ride was hurting me too. Afterwards we go to a Pirate Themed bar and we had beers. It felt so good to drink beers after all that pain.

Now I’m a get to the part of the diagnosis. A couple of days after 4th of July 2013. I went back to DC to visit my niece. I nickname her Young Neezy 🙂 On a Sunday night I was feeling extreme pain around the groin area of my right leg. The pain was sharp and I was limping. I went to bed. I woke up and WOW the pain was super intense. I had to make hard breathing noises to get up. So I finally get up and walk up the stairs. My dad was there and since I already told you that I am stubborn I told my dad to buy me heat pads for my leg. I assumed that I simply pulled a muscle. He saw that I was barely moving said that I should go to the clinic and I was like “fine dad I’ll go”.

So I’m at the clinic and at this point I couldn’t even sit. Everyone was shocked that I rather stand than sit. The doctor saw me and just basically made an appointment to get a catscan and gave me some pills. Well….I am still stubborn and the day and night got worse. I couldn’t sleep at all and was screaming for help. I called my dad but he was a deep sleeper. Long story short I basically sat in a chair barely moving and got NO sleep. My dad woke up in the morning and I said I didn’t sleep at all. He gave me old crutches and was shocked to see me barely moving. No one could help me. I wish I had a wheelchair. Anyways. I miraculous walked to my dad’s car on crutches.

We make it to the hospital and I was basically done. Pain was extreme. They couldn’t even pick me up for the catscan so I was put in the emergency room. And get this folks they kept giving me ‘mad’ painkillers and it did nothing. By the strength of God I finally had enough strength to finally get on the bed. I got my catscan. They said I had fluid in my leg and had to use a needle to get it out. They asked if I am afraid of needles. I said look at my arms. I have lots of tattoos. Needles don’t scare me. Funny thing is when they were looking to where the put the needle the doctor noticed my Soccer ball tattooed on my waist. She said “you must like soccer” and I said “yup”. Then she instructed the doctor to put the needle under soccer ball LOL. That made me laugh.

Well folks I’m almost done. Bare with me. So I’m back in the emergency room. The Doctor is eager to do surgery on me and I’m praying he wont do that. But the Doctor did the right thing by waiting. They kept me overnight to monitor me to see how it goes and then finally folks….the rheumatologists walked into the room. They all have seen my catscan and they all had sad looks to their faces. They asked a bunch of questions and I talked about my history with eye and knee pain and neck pain. They all shook their heads and told me that I have Ankylosing Spondylitis. I was like I have what? They repeated and I still couldn’t even memorize it. I told em to write it down. I never heard of it. Never knew about it. But it was all making sense. I threw away very GOOD boots!!!! And I thought the boots was causing my knee pain while I was working as a dog walker. I want those boots back. I had no idea it was A.S. Now I know what A.S. is. I’m glad I got diagnosed so I can finally get treatment. The mystery is solved and I thought I was just out of shape.

So here is the update so far. I have not started treatment yet. I am in between jobs now. I got offered a event staffer around 4th of July but had to turn it down because ….you know why. I’m gonna take bartending classes now and want to support myself. My neck is what kills me the most. My routine is wake up in the morning. Eat breakfast and take the pain pills for now. If I don’t do it then I’m basically paralyzed to move or very slow. I did made the mistake once of taking a pill without eating….big mistake. I was performing at a Open Mic and I felt dizzy afterwards. I stumbled into the closes restaurant and ordered the first thing I saw. Didn’t care if I liked the food. I just ate it.

Anyways. Thanks to those who read this long Bio and I’m glad we are supporting each other .

Hopefully there will be a cure. We will fight on. We will Rise. So let it be written……so let it be done….. – Daniel

New York, United States of America

11 Responses to “A.S. Face 0962: Daniel S.”

  1. Dear Daniel,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

    • Yeah. I wanted to share my story. I’m still in shock about everything. It all makes sense. Its strange my disease started when I was doing a physically demanding job. That was a horrible way for it to start. 😦 Oh well. That’s life. I’ll keep everyone posted on whats next.

  2. Thank you… hang in there we can fight this fight together.

  3. You rock. I think that you have a great attitude. The AS is horrible but the worst thing is not knowing what to do with yourself. Good for you mate. I’m in the UK and we love pirates who walk dogs. If they were Great Danes you could have rode em up the stairs and tethered other dogs to the big fellas! It would be like an urban dog sleigh without wheels. Bit like a shire horse pulling a bunch of Shetland ponies.

  4. Thanks Daniel for sharing your story XXX

    • Ever since my bones in my neck are starting to fuse together. I started to move like Michael Keaton as Batman.

  5. WoW Daniel I have to say it, as soon as I read that you threw away those boots. I was like how could he throw away those boots!!
    I say you buy yourself some bad ass boots!! I love your sense of humor, I could so think of a couple of jokes about AS! Good Luck with everything and thank you for sharing ur story. We are all like family and we are here for you!!
    Mery > AS face 841

    • Yes I am still made by giving away those boots. They were sick boots. No idea it was the A.S. my former boss hated me. He assumed I was complaining. We had no idea it was A.S. And it started at the wrong time of a physically demanding job. 😛

  6. Welcome Daniel!
    You’ve come a long ways to finally get diagnosed, and I’m going to encourage you, by all means – PLEASE start treatment with the biological that the Rheumatologist must pscribe, if he hasn’t already done so. You need to slow the progression of this monster disease in the early stages before fusion begins – early diagnosis and treatment (not just masking the with pain pills) – but treating the INFLAMMATION that is running wild in your body with Biologics is the only halt to slowing down the damage that will occur to your neck, spine & ribs.

    There are programs that will cover the cost of these Biologics as well – please don’t let the financial part delay your starting treatment, when there really is HELP available.

    Best of luck to you, and please feel free to contact me with any further Qs!

    Faces of AS #700

    • Oh really Candy? what are the programs that can help with the cost? Im currently going to start treatment in Wash DC cuz I only have insurance there. I want to stay in NY but I wanna take care of this first. Yeah I can’t take pain killers forever. the fusion has already begin in my neck. Friends always see me twitching. I think I got turned down for a job because during the interview process I kept moving my neck. She must have thought I was a crackhead.

  7. Hi! My fiancé, Blake has A.S. & just recently (last year) had his second fusion. His neck started to bend and fuse so rapidly, before we knew it he couldn’t drive or do much of anything: literally- anything! They wound up fusing him from the base of his skull almost to his tail bone. He still has a stomach tube (for food & Meds) on the count of them also having enter the front of his throat as well to put rods in his neck to help hold the rods in the back. After the 9 hour surgery, he had to have a breathing tube put in Bc of the massive swelling of his throat. Over a year later he still cannot swallow correctly. He’s been in severe pain for the past 10 yrs. Pain management Dr’s these days don’t seem to care & hes been been passed around to dozens of Dr’s in 4 different states. Your story is very moving & we wish you all the best! Good luck on your journey! 🙏🏼

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