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katieface86 My fellow #ankylosing #spondylitis sufferers, what medication regimen are you on? You don't have to answer, if it's too personal of a question. Or you can DM me, if that's better.
I have been in crazy pain since I ran out if my meds and the only pain doc near me that takes my insurance won't prescribe one of the medications I was on and took me off all the rest. I'm not going back to him because I found out he refused to email my pain doctor in Hawaii back about my case & refused to discuss other medication options while waiting for insurance approval for injections. I was on a combo of meds and steroid injections in Hawaii that made me feel great but now I'm miserable again in NJ. My case is further complicated because my kidneys only function at 50% & I can't take Advil or Aleve or any other medication belonging to the NSAIDs group. Im hoping to see my regular doctor this week and hopefully he can prescribe something to hold me over and keep me out of the ER.
#ankylosingspondylitis #spoonie #spoonies #lifeofaspoonie #spoonieproblems #spoonielife #chronicpain #chronicillness #hlab27 #intersitialnephritis #reducedkidneyfunction #chronickidneydisease #rheumatoidarthritis #tricare #militarylife #healthinsuranceproblems #pain #painmanagement #autoimmunedisorder #autoimmunearthritis #outofpainmeds #needmorespoons #doctors #neesbetterpaindoctor #nofilter #noclue #needadvice
@textgramofficial
3d
  •   katieface86 Advice for a fellow #arthritis spoonie 3d
  •   military_millionaires Nice! You would be a great addition to our team....click the link in our profile! 3d
  •   summerplum where in NJ are you? I can ask my Philly folks if they know anyone if you are close. I know Baltimore & Philadelphia have better doctor options. 3d
  •   katieface86 @summerplum I'm in North Jersey, literally right across from NYC. As a kid I lived South Jersey near Philly and never had a problem finding doctors that took Tricare since there is a huge military base in Southern Jersey. Hopefully my husband gets a job with benefits soon. I'm looking for part time for myself but I doubt I'll find a part time job with some sort of benefits. We only have Tricare until Jan 2015. 3d
  •   summerplum That is frustrating! I imagine it's a pain to cross but is there any luck trying in NYC? 3d
  •   katieface86 @summerplum I might have to go and look in NYC. Then figure out the bus and subway schedule. A bus ride into NYC is about $3 bucks. The toll for driving is $16 or so. Plus it's crazy expensive to park as well, usually $20 or more an hour. 3d
  •   kicking_as I found sulfa helpful and im now on humira and I find that a god sent 2d

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katieface86 A bad couple of pain days followed by a good day then by far the worst night yet. It's so hard finding good doctors that take Tricare since we do not live near a military installation. I hope I find a doctor this week & schedule an appointment. Then I hope to see my regular doctor, explain the entire situation and hopefully he will cover my meds in the meantime. He has in the past before I moved out to Hawaii so I hope he will do the same this one time. If not, I have a feeling I'll end up in the ER.
If I could take Advil or Aleve, that would be amazing but unfortunately I can't due to my interstitial nephritis and reduced kidney function. Advil, Aleve, Motrin abd other #nsaids caused my kidney issues
#chronicpain #chronicillness #ankylosing #spondylitis #ankylosingspondylitis #rheumatoidarthritis #tricare #militarylife #wedontlivenearabase #pain #painmanagement #autoimmunedisorder #autoimmunearthritis #severepain #outofpainmeds #spoonie #spoonieproblems #spoonielife #lifeofaspoonie #nofilter #greatinsurance #noonetakesithere #intersitialnephritis #reducedkidneyfunction #needmorespoons #textgram @textgramofficial
3d

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katieface86 Fellow Spoonies, is there anyone who can recommend a good pain managment doctor AND a good rheumatologist?
I live in Northern New Jersey right across the #hudson #river. Local would be awesome but I am willing to travel for a great doctor. I know there are fellow #sponnies who do live in #new #jersey & #nyc. Even if you don't know of one personally, please ask your spoonie friends. I know the spoonie network is huge and is great for these types of things! I had a consult with one pain management doc last week and I already know it won't work out. He refuses to talk or email my previous pain doctor to discuss my case since it's really complicated. He refuses to prescribe one of the meds intake which I understand but won't even try something similar. And he cut my other meds by more than half. So no extended relief pain meds and breakthrough meds cut more than 60% as well as my muscle relaxer and lidocaine patch. I'm trying to find a new doctor before my next appointment on Setember 15. I hope someone can help recommend some names before then! THANK YOU! #neednewdoctors #referral #spoonie #lifeofaspoonie #spoonieproblems #spoonieforlife #rheumatoidarthritis #ankylosing #spondylitis #ankylosingspondylitis #chronicpain #kidneydisease #rheumatologist #painmanagement #advocateforyourself #nyc #newjersey #bergencounty #hudsoncounty #willingtotravel #interstitialnephritis with @instaquoteapp. #instaquote
1w
  •   katieface86 @jennylomsdal thanks @purpleviolin91 awwww ok. I am 5 minutes from NYC if there is no traffic lol. If my husband gets this one job, we would be move to the Philly area! 1w
  •   purpleviolin91 @katieface86 are you near Hackensack? Ive heard some good things about dr datta http://www.centerforpain.net/about.html 1w
  •   katieface86 @purpleviolin91 yes! I live 15 minutes from Hackensack! I heard the same thing about him but unfortunately they don't take my insurance. :-(. I'll have new insurance in January or when my husband gets a full time job and hopefully it'll be something that Dr Datta's office takes. My husband just got out of the military. We still have insurance through the military . It's good insurance but no one takes it wear I live. When I was a kid, I saw docs in Philly & Cooper all the time cause I lived on Fort Dix. 7d
  •   katieface86 @purpleviolin91 I appreciate the link . I called them first thing this morning then went back to sleep cuz I had a bad night. That's why I'm just responding to you now. :) 7d
  •   purpleviolin91 @katieface86 yeah I see Cooper now 7d
  •   skinny_storr @katieface86 one of the products my company has might help you. I would love the chance to help you and hopefully find relief for your pain. 6d
  •   katieface86 @skinny_storr which product? My kidneys function at about 50% & I have to be very careful with everything I put into my body. 6d
  •   skinny_storr @katieface86 I completely understand. tell me exactly what you have besides rheumatism and your kidneys, I will ask to make sure what will work best for you. 6d

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Normal Ashley Sloan
ashleysloan7 Suppressed immune system probs That one time when your allergies turn into pneumonia a week after getting your Remicade infusion which basically means your immune system just got slammed - perfect timing! Went to the doctor on a whim, the minute we were supposed to head to our 6 Year Anniversary weekend in Colorado Springs, bc my chest hurt to breathe...just to check it out before being away from my doctors for the weekend. But you have to be proactive & careful on Remicade! So glad I went in!!! Ryder got a kick out of my Mickey Mouse mask FYI- I definitely won't be wearing this mask, ha. But maybe I should...who wants to wear these with me? #ryderthomas #1year #23months #23monthsold #pneumonia #walkingpneumonia #lunginfection #remicade #infusion #ankylosingspondylitis #ankylosing #spondylitis #biologic 3w
  •   kmpowell Get better!!! 3w
  •   helloashleyjane Bummer! Feel better! 3w
  •   courtbrink Oh yuck!! Hope you feel better asap! 3w
  •   jrdmorgan That's awful, feel better soon! 3w
  •   haolepinos Get well soon!! At least you have a Disney mask right?!? Ahhaha if totally be stoked and wear it with you if I could! 3w
  •   sagetbo Feel better!!!! 3w
  •   finleys_mama I swear I must have this. I'm going to have to ask my doctor. Are you feeling better? I hope so! 3w
  •   arthritiskenz Praying for you momma!!! Those infections are the worst! 2w

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Normal Liane

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hopecourageinspiration Value in Every Obstacle
August 7
**
Just as obstacles in life are inevitable, so are the opportunities that accompany them. How you view challenges is the proverbial fork in the road. Make the conscious choice to walk the road less travelled.

Sure, it may sound nice to swap your obstacles for those of another, but that trade is likely even, in the scheme of things, and you’ll probably find those challenges just as difficult as your own.

Working through difficulty reveals your authentic self. It builds confidence, unearths inner strength, unveils your purpose and shapes your conscious legacy. Seize the obstacles you face, head-on. Don’t resent them or avoid them, excuse them or bemoan them.

Turn your: - obstacles into opportunities - strife into success - challenges into conquests - and trials into triumphs

Feel the accomplishment that accompanies the hard work you put in to overcome the obstacles in your path. Embrace your newfound strength and understand that your abilities lie far beyond what you could ever imagine.

#hopelives

You can listen to the audio version of this message, along with the story behind it, at: http://wp.me/p45MKU-pB
3w

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Normal Katie Pavlik-Lanza
katieface86 Ok fellow spoonies, I need recommendations for a pain management doctor in the North Jersey, NYC, NJ / NY State Border. I am willing to travel even further for a great pain management doctor. I will miss my pain doctor in Hawaii and I hope to find a doctor like him here in Jersey. I run out of my meds in about a month! My Ankylosing Spondylitis & RA needs to be kept in check lol. #ankylosingspondylitis #ankylosing #spondylitis #autoimmunedisorder #inflammatory #inflammatoryarthritis #iamthefaceofarthritis #faceofarthritis #autoimmunearthritis #chronicpain #spoonie #fellowspoonies #painmanagementdoctors #painmanagement #ineedapainmanagementdoctorinnj #pleaseletmeknow #arthritis #hatehavingtofindnewdoctors #doctors #pain #paindoctors #spoonielife #lifeofaspoonie #needmyinjections #needmypainmeds #cantrunout 4w

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ashleysloan7 Besides my vein getting blown today & getting my infusion a week late , I am getting my Remicade infusion so I'm happy! And for your every 8-weeks, Ankylosing Spondylitis Awareness fact, thanks to @spondylitis , read on #ankylosing #spondylitis #ankylosingspondylitis #as #autoimmune #disease #remicade #infusion #rheumatology { Thanks for the nautical pants @kelsigormley ️ } Now read 1mon
  •   castleberryphotography You're awesome ash. 1mon
  •   ashleysloan7 No @toriglass , thank goodness but my veins feel bruised ha! 4w
  •   ashleysloan7 @absdegraff -Haha well you can ask me questions any time about AS lol! It takes the average person 10 years to get diagnosed (& being in pain for that long!), so I figure I might as well share a fact here & there. You never know what may happen or who may never know they have it. You never know! I feel like everyone has heard of Rheumatoid Arthritis & no one ever has heard of AS & they are so similar but with diff. joints... When AS is out of control, it can disfigure your joints & cause so much irreparable damage. Anyways, thanks, your fav store - JCrew 4w
  •   ashleysloan7 @castleberryphotography -You're awesome! Can't believe you're going to have a baby boy so soon!!!! Can't wait to "meet" him & hopefully really meet him soon! 4w
  •   piola100 I'm going through a not so lovely flare.... It's kicking my ass at work 4w
  •   ashleysloan7 So sorry to hear @piola100 Hang in there & hope you get some relief soon! 4w
  •   piola100 Hope the same for you 4w
  •   don_juan730 Have you tried a starch free diet? 4w

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healthymomma5 Such a great cookbook to help those that are doing the autoimmune paleo protocol. I love the meal plans!! It makes it so easy when you don't know what to make. #paleo #autoimmune #AS #ankylosing #spondylitis #cookbook #healthy #clean #eat #food #paleoAIP 1mon

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healthymomma5 Yummy dinner for me!! The kids are all doing their own thing so I'll eat in peace and quite until they come wanting some. #paleo #paleodinner #AS #ankylosing #spondylitis #autoimmunepaleo #AIP #healthy #clean #eating #food 1mon

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eatincolor Super Foods Salad and Prickly Pear Kombucha from #brewed on Magnolia Ave in #fortworth. YUM! 1mon

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noladawn_ Like scrolling through the guide and recording #random #movies... Scrolling through fb and apparently saving pics to camera roll BC of holding my finger too long as a had a #nappy-#nap. #insomnia #fibromyalgia #ankylosing #spondylitis #chronicpain #immunedisorders #spoonies 1mon

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Normal Katie Pavlik-Lanza
  •   blonde1510 Hope you are ok?!! 2mon
  •   kaikai1634 What happened?hope u feel better @katieface86 2mon
  •   katieface86 @blonde1510 @kaikai1634 thank you! I'm home now. I was having elevated heart rate, elevated blood pressure, chest pain and palpitations. My regular doctor sent me to the emergency room to get checked out and to make sure my kidneys were ok and not causing it again since it has happened before. My kidney function is the best it's been since I was in kidney failure in 2012. My function was 20% in 2012 & it's almost at 50% now. My bloodwork and ekg is all normal except for an elevated white blood cell count. The ER doctor thinks I have a virus of some sort and to go to my regular doctor on Monday. 2mon

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  •   stephanemartin Megs, I was a experimental patient for rituximab which belongs to the same family of antibody therapy. Considering it was effectively chemotherapy and the drug is used to treat things such as non-hodgkins lymphoma, leukaemia, post-transplant care - you can imagine it's pretty strong stuff. Similar side effects were presented to me but you have to accept the risks for the hope of longer term good health! It's not exactly over the counter medication... I had to go through weeks of tests and screening before treatment. I have loads of information on it if you need any x 2mon
  •   mmorewood Interesting @stephanemartin however nutritional & emotional therapy has also been proven to help prevent and heal cancer patients and ailments I mentioned before. Also interesting that the large pharmaceutical companies make too much money from sick patients therefore nutritional therapy is illegal in most countries. X 2mon
  •   katejrichards This drug saved my best friends life. She wouldn't be here without it x 2mon
  •   mmorewood That's amazing your friend survived @katejrichards I just don't feel these drugs should be used in cases where there is an alternative that's never even considered. 2mon
  •   mmorewood There are too many of these drugs @duncanbalcon and even doctors are warned before buying them to prescribe. We need to be more aware of alternative and emotional therapy. Few people are made aware of the benefit of healing cells through emotional and nutritional therapy....but we all SHOULD be. 2mon
  •   katejrichards Absolutely however at such an enormous cost to the health service this drug and it's side effects are last case options for many I'm sure. I know Hannah wouldn't be on this if she had a choice. This drug was the only option x 2mon
  •   ryan_keyworth @mmorewood remicade and other biologics work there's isn't a questions of it or not it's a fact. If they have one incident of someone passing away from the medication they have to put it out there . My probLem with natural paths is they can charge whatever they want and there is zero accountability in that field meaning they aren't regulated they conduct clinical trials. 1mon
  •   mmorewood @ryan_keyworth they work, but at what cost? I agree the cost of nutritional and emotional therapy should be regulated and people treating in secluded environments should be as accountable as a doctor prescribing drugs, it should be used more in medicine to also prevent this. I've had first had experience many many times and very recently with doctors over prescribing drugs that actually keeps one illness at bay and wrecks other parts of your body. Most people just take what their given without considering the risks. It's a fact that nutritional therapy is illegal in most countries and why? To benefit to pharmaceutical companies and doctors because they know it would work. 1mon

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  •   spondymom Sending extra strength & spoons your way!! 2mon
  •   readthisline Awesome! 2mon
  •   southernthrive Nice Profile. How about a sample of Thrive? DM your email. Thanks. 2mon
  •   katieface86 @southernthrive thank you but I am not interested in Thrive. I have greatly reduced kidney function and cannot use anything not approved by my nephrologist and renal nutritionist. 2mon
  •   katieface86 Thank you @spondymom I can use all the spoons I can get today. I'm ready for a nap after being up only an hour lol. 2mon
  •   mctd_support I hope you can get some relief soon. 2mon
  •   katieface86 @mctd_support thank you! I'm feeling somewhat better after resting and a 3 hour nap & pain meds. Naps are a spoonie's great friend. I hope I can sleep much better tonight & the steroids in the injection start to work because on Sunday my husband goes back to work for 14 hours and I have a crazy puppy lol 2mon
  •   mctd_support Puppies are hard work! Stay in bed as long as you can! 😴 2mon

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Amaro The Spondylitis Association
spondylitis Calling all AS Warriors!!! This is truly important. In case of an emergency could First Responders cause you harm in working to save your life? They could if they don't know you have AS. Please visit our page at www.spondylitis.org and read this article. Make sure you have something on your person that says "Ankylosing Spondylitis: Brittle Spine Disease". #spinalcord #spondylitis #infusion #ankylosing #inflammation #invisibledisease #arthritis #standtall #emergency #911 #autoimmune #spoonies 2mon
  •   familyfirst28 That reminds me of when I went to a chiropractor (before I found out I had AS ) he kept pushing down on my mid back. I would be as relaxed as can be and breath appropriately but to no avail. I still had more back pain and he would be frustrated. It was bad 2mon
  •   spondylitis @familyfirst28 it's so sad. That's a common experience for many AS warrior dealing with various types of physicians. 2mon
  •   selfcatheter Real comfort, real humans on the phone FREE samples & Free shipping Email Info@selfcateters.com for info! 7d

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noladawn_ #Fibromyalgia #ankylosing #spondylitis #chronicillness Silent diseases make it harder for loved ones to understand. 2mon

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