Autoimmune Disease Does Not Equal AIDS

I posted a picture of myself on Instagram today with the hashtag #autoimmunedisease. A male friend of mine from my high school days commented. “U have AIDS?”
I had to stop and ask if he was being serious to which he replied “#autoimmunedisease?”
Seriously???? Do people really think AIDS is the same thing when someone says autoimmune disease?
So I copy pasted the definition of each and explained that I have Ankylosing Spondylitis which is s type of autoimmune disease.
Obviously the general public needs to be better educated about autoimmune diseases.


Is It Grief or Depression? And Why Do I Feel the Need to Put a Name to It?


For about three months now I have been extremely emotional. More emotional than normal — like I’ve cried more in the last three months than the last two years combined. But I’m not counting the time period that I binge watched Grey’s Anatomy or Game of Thrones or those other feelsy shows, because get real who doesn’t get emotional watching those? I’m talking about REAL crying.

Before I was diagnosed, I just assumed that it was because my pain was out of control and my knee was the size of a grapefruit and I wasn’t sleeping. Well, now my pain is not so high on the painscale, it hurts in more places, but it’s about a six instead of a nine most of the time. So we call that under control, right? I sleep more, still tired all the time, but I don’t experience painsomnia every night.

So, why am I sad all of the time? Why does the littlest thing send my into a crying fit?

Am I grieving over the loss of my health? I think yes, in a way I am, but I don’t know that it explains why I am emotional and find myself becoming overwhelmed and crying about something as stupid as being asked to recall the password for a login at work. I took the day of my diagnosis to allow myself to process and grieve. I went on Pintrest and created a whole board dedicated to my disease. It’s full of inspirational quotes, health information, memes that explain to others what I am experiencing. It was the day of my diagnosis that I decided to begin my glutenfree journey. I took that day to grieve, but also to try to empower myself.

I know that I have depression. I was diagnosed in 2006, but I am on Celexa and have had it under control for a long time now. Is it possible that because of my diagnosis I have become “more” depressed and the meds aren’t working anymore?

Or am I just plain old sad and moody because I don’t feel good, my life has drastically changed, and I am frustrated by the whole damn injustice of having a debilitating disease at the age of thirty? Does it really matter WHAT it is? Yes, yes, I need to know why. I’m that kid, that kid that asks you why an annoying number of times. I need to know what is causing me to cry, and be sad, and overwhelmed, so I can make it stop.

Did any of you experience this emotional weepy reaction prior to and after your diagnosis?

Prayers and Healing Hugs,





I Don’t Always Get Sick, But When I Do I Get Something No One Has Ever Heard Of…


“ANKLEEOOSING….. ANKEELOSING… Ankylosing Spondylitis. There it is.” On Monday, September 8, 2014, I sat in my car outside of Arthritis & Associates trying to type the diagnosis that Dr. Bushan had just provided me with into Safari on my Iphone. He had spent some time discussing it with me, but to be honest his Indian accent is extremely thick and a little difficult to understand at times. I knew that it was a form of arthritis, that it was an autoimmune disease, and that it was genetic, though no one that I could think of on either side of my family had ever had any kind of autoimmune disease. We have a lot of cancer in the family, but never heard of anyone having an autoimmune disease.

“Ankylosing Spondylitis, or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort. In the most advanced cases, this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. Ankylosing Spondylitis can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved, and rarely, the lungs and heart can be affected. The severity of AS varies greatly from person to person, and not everyone will experience the most serious complications or have spinal fusion. Some will experience only intermittent back pain and discomfort, but others will experience severe pain and stiffness over multiple areas of the body for long periods of time. AS can be very debilitating, and in some cases, lead to disability. Almost all cases of AS are characterized by acute, painful episodes known as “flares” followed by temporary periods of remission where symptoms subside. It is important to know that Ankylosing Spondylitis is a chronic, life long disease and that the severity of AS has nothing to do with age or gender. It can be just as severe in women and children as it is in men.”

“Well, holy hell,” I thought to myself. “Why couldn’t it have just been a Meniscus tear?”

“A Meniscus tear?” You may ask. “What does that have to do with arthritis of the spine?”

Well, let me back track a bit…

In May 2014, I was crouched down, working on our server in the office. As I stood up, my knee felt tweaked a bit, but there was no pop. I assumed that I was just THAT out of shape that I had pulled a muscle or something while standing up. However, the pain was worse the next day. And worse the next day. It leveled out for a while, walking was a little difficult. I looked like I thought I had some gangsta swagga. And then it got really bad. I was no longer capable of bending me knee. Moving from standing to sitting or vice versa became nearly impossible, so I finally went to the doctor in June.

The doctor did some blood-work, asked me questions about how the knee came to be swollen, which it was swollen like a grapefruit at this point, if there was a pop or crack, and they took some x-rays. Well, other than inflammation, all the tests came back normal. They sent me on my way with some mild anti-inflammatory pills. There was no improvement. I’m starting to think that they are obviously missing something in the XRays; I must have torn a meniscus or ACL, or MCL, something!

So then a few weeks later, I go back again, the pain is now so bad that I can’t sleep and I’m crying all the time, I can’t work… And all these doctor visits are being paid out of my pocket because no one in town takes my Obama Care Blue Cross Blue Shield Health Insurance. They run more tests and send me away with different pills.

Well, now I can’t walk without help so I start using a cane, but then my wrist and thumb start hurting on my right side, same side as my knee, same side that I am holding the cane, so I assume that the pain is from using the cane. I get rid of the cane, but the pain in my wrist and thumb does not go away. The doctor runs some more tests and suggests I get an MRI. He suggests the knee pain could simply be Jumper’s Knee, Tendonitis. So I start getting Advanced Muscle Integration Treatments from a chiropractor, and I get the MRI.

And then the pain spreads to the right side of my jaw joint. Okay, I know that there is nothing that I have done to cause my jaw to start hurting. I return to the doctor and I’m now using crutches. And, despite the chiropractor trying to convince me that the treatments are working, it’s pretty obvious to me that I am not getting better. The MRI shows nothing unusual.

They finally refer me to a Rheumatologist, who of course does not take my insurance, so my first visit is another $850. Dr Bushan does a very thorough exam asking me questions about my past health, past pain, family history, taps, pokes, and prods, a variety of areas on my body and let’s not forget the mandatory x-rays and blood work. Dr. Bushan says that with my history and the blood-work that was sent over from the other doctors it seems pretty obvious to him that I have some type of arthritis going on for sure, especially since my inflammation sedimentation reading was a 100. The trick is simply going to be identifying what kind of arthritis, since my symptoms do not follow a normal course. He says he feels comfortable ruling out Rheumatoid since the pain is not paired joints. He gives me Prednisone, and for the first time in months (it is the end of August by this point) I am regaining some normalcy in moving around while taking the steroids.

Fast forward to the where our story started. September 8, 2014. Dr. Bushan tells me that I have a genetic indicator for Ankylosing Spondylitis, and that with my long history of back pain that goes all the way back to the late 90s when I was in junior high, with the random pains that I would complain about for the last five years (only to receive eye rolls), with the Tietze Syndrome I was diagnosed with in 2013, with the weird tingling sensations in my feet, and my constant fatigue, and unwell feeling (which I was often accused of all being in my head or faking), all adds up to and can be explained by the diagnosis of Ankylosing Spondylitis.

I guess the shock was in the fact that there really was, indeed, something wrong with me. Maybe it was because all my problems had always been brushed off as nothing but me being dramatic, a baby, too sensitive, or a faker got to my head to the point that I believed I was not, could not really be sick. And of course I never went to he doctor for any of those other symptoms, because they “were not real,” with the exception of the Tietze Syndrome. I went to the doctor in that instance because I thought I was having a heart attack.

This whole experience has left me wondering what it says about me, or maybe about society, that in these cases I had to get to the point that I thought I was having a heart attack, and then to the point that I literally could not walk, before my illness was taken seriously enough by myself as well as by the people around me to be addressed. And why it took so long, so many doctor’s visits, before they decided that they were not doing me any good and should send me to see someone else. And I know that even though many of my symptoms have been going on for years, I still received a diagnosis a lot quicker than many people do. So many suffer in silence or suffer without any relief for years and years. Stand up for yourself! Only you know what you are feeling. You know your body better than anyone else.

Gentle Healing Hugs to All of My Spoonies.

I’ll be Praying for a Cure~



How to be friends with a spoonie

Advice for Friends of Spoonies!

Spoonie following God

I’ve seen a lot of posts and things about friends of spoonies and then I see spoonies complain about their friends. SO I decided to write my ideas into a little “How to”. DISCLAIMER: EVERY SPOONIE IS DIFFERENT!! Not everyone feels the same as me. BUT if you are a spoonie and this feels right to you, send this to your friends. Share this on facebook and maybe say which one means the most to you! People don’t change until we tell them how we feel.

How to be friends with a Spoonie

  1. NEVER say “If I could take it away, I would”! This is my biggest pet peeve. OBVIOUSLY you don’t want me in pain, I don’t even want people I hate to be in pain. This hurts us. After hearing this, spoonies will try to actively hide pain from you, which will normally cause MORE stress and pain…

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