#rheumatoidarthritis

LIVE

I’ve only been recently diagnosed with AS, but I’ve been looking for a diagnosis for over a decade. It all started in my early 20s with generalized pain and excruciating sharp pains coupled with swelling in my joints. At the time my blood work and clinical findings indicated lupus but there wasn’t really enough there to diagnose me. The rheumatologist also thought I might be heading toward a rheumatoid arthritis diagnosis, but there wasn’t any visible damage to my joints on the images yet, and my RF was negative. So, back in the early 2000s I was in diagnosis limbo and placed on a series of mediations that were under a lot of scrutiny at the time: Vioxx, Bextra, Celebrex. I was very sick on these medicines and I felt like I was drowning in a sea of pills from everything that was being prescribed. In the end, sometime in 2005, I just decided to “cut my losses” and drop out of treatment with mainstream medicine. I did see a naturopath and eventually an Integrative Medicine doctor, but my experiences were not as positive as the many people who have had success with those methodologies. Unfortunately, after about 6 years of just “hanging on” I had a severe downturn in my health. It all happened during the happiest time in my life too, which is sad.

In 2011 I gave birth to our charismatic little son. The pregnancy was miserable, with every complication I could imagine, followed by an emergency induction at 35 weeks after being on hospital bedrest. It seemed that my body never recovered, and over the next two years as I got worse my doctors seemed all too willing to let me blame any ache or pain on post-pregnancy healing… or to suggest I had post-partum depression. During that two year period we also moved, and the move was excruciating. I ended up needing my mom to come from out of state to help because my whole body locked up on me. It was at that point, where I went beyond pain and into immobility, that I promised my husband I would find a rheumatologist and get to the bottom of things. The worst part of all this has been the way it impacts my husband and son. The constant feeling that I don’t measure up as a wife or mother stinks, but the days where my husband has to do double the work, or my son wants to play outside but mommy can’t handle going for a walk are worse. When he sees the other kids get picked up for a better view at the zoo – well, sometimes mommy can do it (I guess he’s sorta-lucky that mommy is in the beginning of the AS journey because some AS moms couldn’t EVER do it)………I have AS. I am one of the faces of AS.~Angel

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#spoonie autoimmune chronicpain arthritis spondylitis #spondylitis #ankylosing #ankylosing spondylitis #chronicillness autoimmune fibro spoonielife #spoonielife #spoonies #invisibledisease #arthritis #mother #babyboy #rheumatoid #rheumatoidarthritis

@SAA Connections

Wed, 16 Apr 2014 14:25:00

I want to start off by acknowledging how fortunate I am. On top of being in a good place financially, I also have top notch insurance.

But I’d like to tell you a story about how that doesn’t make one shit of a difference in today’s America.

I have a chronic illness (rheumatoid arthritis), and coupled with the asthma I’ve had since childhood, this pair makes getting a cold or the flu a combination of pretty fucking terrible and terrifying. There are times when I’m sick that I worry at any given moment I suddenly won’t be able to breathe. Everywhere I’ve ever lived, the first thing I do is map out hospitals that take my insurance in case I have to rush there for emergency breathing treatments. Sometimes I wake up at 3am with a heavy, congested chest and wonder if I need to wake up my boyfriend to drive me to the emergency room.

Because of these issues, I applied for a nebulizer from my insurance company. A nebulizer is a heavy-duty air compressing unit for asthmatics that delivers an intense dose of medication. From the age of 7 to 24, I used one of these units. I used it so much that I wore out the motor. Getting this nebulizer cut my emergency room visits in half. It was a godsend for my family.

When I was diagnosed with RA, I applied for another unit. I was getting sick all the time due to my compromised immune system, and I wanted to have a nebulizer on hand in case an issue with my asthma arose. Since the age of 28, I’ve applied for a nebulizer 4 times. I have not once been able to get it approved.

Last year, I tried one more time. Why not?! I had brand new insurance! And happily, I managed to get the medicine that goes inside the nebulizer approved! A box of 150 doses of albuterol shipped to my house the same day I got a notice that the nebulizer had NOT been approved.

What. The. Ever. Loving. Fuck.

Why? I have a history of asthma. I have autoimmune. I have 150 vials of albuterol sitting on my front fucking porch! Why?!

The explanation I received was that it wasn’t deemed critical because I could receive a nebulizer treatment at a nearby EMERGENCY ROOM. An emergency room nebulizer treatment would cost me upwards of $300; an at-home nebulizer treatment would cost me 10¢.

Today, I’m sitting here with in the midst of a terrible flu, having finally broken through a 100° fever, and I found myself wondering if I should go to the emergency room for a nebulizer treatment because I’m having trouble breathing. And then, in a desperate daze, I find myself cleaning out my old essential oil diffuser and filling it with liquid albuterol doses and saline solution and sitting in the mist it’s spewing out while I do deep meditation breaths and try to inhale this weird patch of medication provided by a discount Amazon product because the insurance I PAY FOR won’t approve a life-saving machine I need.

This is part of why I care about socialized medicine more than anything else. The number one cause of bankruptcy in America is a bad medical diagnosis. But like I said, I’m fortunate. Unfortunately diagnosed, but fortunate. In a state of frustration and anger, I spent the rest of evening searching for a nebulizer, which I just paid for out of pocket - no problem. But that’s me.

But sure, tell me more about how we need tax cuts for the rich.

#medicaid #medical crap #socialized healthcare #socialized medicine #chronicdisease #rheumatoidarthritis #asthma #autoimmune

@humblesandwich

Sun, 09 Feb 2020 23:19:01