Tuesday, January 8, 2019

Weight loss/gain/bloating/gassiness.....

Don’t confuse inflammation with weight gain/loss and/or bloating

Just let that sink in a minute.  Some have already stopped reading...if you're wanting knowledge and education of inflammatory disease...continue on...

Let me just begin this post by saying…yes! I’m going to make some of you mad and you’ll probably unfollow me on social media…I don’t really care. In a world of be careful what you say or post-- In a world of #metoo--- In a world of “political correctness”---- I see a LOT of folks saying (posting pictures) look at all this inflammation I had and now look at me.  Yes!  I see you’ve lost WEIGHT, but I do NOT see inflammation.  So to kick off this New Year full of get your gut right, drink my drink and/or join the gym and everything will be perfect in your life


You are actually insulting those of us who truly suffer from an inflammatory disease; those of us who are PRESCRIBED the only thing that will help with inflammation.  Do I believe that your gut health is important—YES! Is there any proven research that gut health will cure me…NO.  Is there something I can do for inflammation, YES! It’s actually prescribed medication.  Sometimes it’s nothing..by that I mean rest!

Please be very careful when recommending “things” to those of us who suffer from an incurable disease.  There isn’t one product out there that truly doesn’t have harmful ingredients in them.  Not one.  Some interfere with prescribed medications and can be harmful. I’ve researched all.  I DO want to have less inflammation….less pain…less joint destruction…TO BE CURED! 

Inflammation-an example; you twist your ankle, its swollen, head to the DR, they x-ray, it’s not broken (thank goodness), you go home, take an anti-inflammatory medication, ice and rest and then it heals and inflammation goes.  That’s not weight loss.

It offends me that you suggest something without even knowing what the name of my disease is or any knowledge about it.  Also, that you don’t know that I don’t just suffer from one…but multiple. I'm going to tell you a little information of the 3 I'm suffering from.

I have new bone growing in my body—new BONE.  Bone that causes destruction to tendons and muscles.  Bone that will fuse joints together.  This is not something that your product can just heal.  This is a disease with no cure.


Do you know what enthesitis is? Ever heard of it? Did you know it’s a DISEASE?

Enthesitis is irritability of soft tissues (muscles, tendons or ligaments) where it enters into the bones. It is caused by joint DISEASE and is the main sign of spondyloarthritis. It is also linked to diffuse idiopathic skeletal hyperostosis (DISH), an ailment in which a few of the spinal structures shore up.
It is a typical clinical aspect of spondyloarthropathy and is located generally in the knee or heel (can affect other joints). It may sometimes be seen in joint disease, endemic lupus erythematosus and sarcoidosis but is uncommon in other ailments.

Enthesopathy may be because of an inflammatory ailment just like psoriatic joint disease or an ailment caused by injury or overload such as plantar fasciitis. These may also be associated with tenosynovitis or tendinitis in Enthesitis.

In enthesitis, inflammation brought on by recurring stress results in sensitive spots and sometimes calcification and fibrosis, at the areas where the ligaments and tendons link to the bones.

Scleritis:  heard of this one?  Yep! A DISEASE as well.

Scleritis is a rare condition in which there is serious inflammation of the sclera, the white of the eyes. Symptoms of scleritis include blurred vision, eye pain, eye discomfort, red patches on the whites of the eyes, tearing of the eye, and sensitivity to light (photophobia).  If not diagnosed and treated promptly, complications of scleritis can be serious. Complications can include perforation of the eyeball, loss of vision, and loss of the eyeball (ummm yikes).

gut health....is it really weight gain and BLOATING?
Do I believe in gut health and that our gut is the answer to all? I do believe in "gut health", but my gut isn't going to cure me. There are some things we can do for our GUT and INFLAMMATION and those are eating foods that help with inflammation. Oh, and a benefit to eating healthy could be weight loss...but don't confuse weight loss and inflammation.
 Here's a list of some of those;
Blueberries, oats, ginger, green tea, dark chocolate (for the win), salmon, red peppers, turmeric, beets, broccoli, black beans, extra virgin olive oil, tomatoes, chia seeds, pineapple, spinach, whole grains, eggs, garlic, oysters, kamut, yogurt, apples, nuts, canned light white tuna, rosemary, bone broth, coconut oil, raw honey, and miso.  Side note for you kale eaters--eating raw kale can cause bloating.  Know the difference in bloating and inflammation. If you were gassy and now you're not..that's not inflammation, that's bloating.

The most important thing about healthy eating is it does make you feel better.  And please don't start on exercise...I'm currently on a use my knee as little as possible to help reduce inflammation...those of us with disease do what we can when it comes to exercise. 

Some of you that have continued reading, thank you and this is going to get real!

Those of us with inflammatory diseases also take medications prescribed by Doctors.  This article was written after a comment I received telling me that someone with certain diseases might want to try a certain "product"...this comment really didn't settle well with me.  Also, All of the pictures posting how folks have "lost" inflammation because of...well...basically dieting....I mean you didn't lose inflammation, you lost weight. Those of us that truly have an anti-inflammatory disease wish it was that easy.  It's not.  Instead of asking us if we've tried your product and wanting to share how so-and-so was healed, why not do some research and educate yourself on the diseases that have no cure.  That just have managed care.  That we fight with daily...the fight to just do life.  That we fight with medications that cause horrible side affects including weight gain/loss (tons of things)...that we can't just stop taking and be healed by your special drink.  I even read something that said, they have stopped taking all those "pills"....really....and you replaced them with another set of drinks/pills.  Call me when you go off THOSE pills/drinks/supplements and still feel/look the same.  Folks we don't chose this. We don't want it.  It's our life.  The most caring thing you can do...educate and fight with us. Don't think lightly of what we have because it's certainly not light...it's very heavy!

AS has my body, but not me!

Friday, January 26, 2018

Loving being a grandmom and still hating AS!

Those of us living with this horrific disease would love to be able to say.....I’M CURED!  Instead we just keep on “doing life” the best we know how!

Seems I had a lot of comments asking questions about “how to help”....well, first let me say that I’m not a doctor.  This blog is intended to give those of us who suffer information and knowledge about AS, and let’s face it, it’s basically things happening with me and things I learn from others!  It’s all about sharing and very important that we realize that we all present differently and sometimes even have differing symptoms and pains!  But the more we share and get the word out there about AS, the better our care will be!  

Some comments have been how to help without medicine.  Folks—-I’m not sure you can do that!  How do you manage a disease without medicine?  Find a good rheumy and get on a drug protocol that will MANAGE your AS.  Sometimes you go through a LOT of trail and error finding what will bring you relief, but definitely get that help that is much needed so you can “do life”.

Be sure that you understand all that happens when AS is attacking your body!  I loved that I finally saw this picture in my doctors office because folks IT’S NOT JUST THE SPINE!  I’ve shared this before, but thought I’d share again.  Knowledge is key!  Learn all you can about what’s going on with YOU and then talk with your doctor on how to treat and manage your AS.

For me, since my last post, I’m enjoying being a grandmom (Mo) to my precious girl Lilly!  She brings so much joy in our lives!  I never understood the “grand” part till now!  It is certainly GRAND!  

I’m still on Cosentyx injections and also methotrexate injections trying to just do life and manage this disease the best I can.  Yes, there are tons of other meds I take as well.  Find what will work for YOU and do it!  Try things and see if will help.  There is no cure only managed care and what may work for you, might not work for me!  BUT, it doesn’t mean you shouldn’t try and share!  We are all on this AS journey together and we need to fight for ourselves and each other!

AS has my body but NOT ME!!

Friday, August 25, 2017

living life to the fullest with AS

AS has my body, and NOT me!

I usually end with this, but today It's going to be the beginning!!  I'm still dealing with the "healing process" from the anterior cervical discectomy and fusion.  I still struggle with the feeling of something in my throat!  I'm continually learning more and more about this horrible disease!  It would be much easier if it just affected one part of my body!!  NOPE!  Instead AS just continually gets more and more of me!

Since my last post, we've had some exciting family events.  My youngest got married to a Coast Guardsman who we love!  This 2nd son in our family is a perfect addition.  Thankfully they aren't stationed too far away either!  I'm that mom that would love her family to just all live on the same property LOL!  The wedding was beautiful!  Thankfullly AS didn't rear it's ugly head until the day after--and when it did--WHOA!  Talk about the worst day EVERRRRRRR!  Literally thought I was going to die!  Thankful for my family and friends who took care of the departure details (destination wedding) but most importantly took care of me!

My current AS regimine. I'm still on Cosentyx injections (I actually do 1 150 shot every other week).  I've added weekly methotrexate injections as well.  I ask myself all the time....is this working?!  Of course there's tons more medications that are required for me to "do life".  My eyes are still under attack by AS.  Sometimes I just think...if the eyes and head didn't hurt, I think I could deal much better.  Just at the time you think ok, I've got this, AS says...but wait!  Let me attack, current addition for me-my elbow!  Easy terms for all is it's called tennis-elbow, epcondylitis is the medical term.  I've never played tennis in my life.  I actually hadn't done anything to cause this joint irritation..it's called life with AS.  I've had the cortisone injection, wearing braces to rest it and currently undergoing physical therapy.  So, let's discuss this PT...I mention why I'm here, not an injury--I have AS.  Well your DR wrote epcondylitis and that's muscle not AS/joint.  People-I almost got up and left!  it was all I could do to sit there and not speak my mind--you know NOTHING about AS.  It's called inflammation!!!!  Ugh!  So, yea..enough about the elbow except to say..thank goodness I'm a lefty (it's the right elbow)!

It's so frustrating when you hear comments from healthcare providers that you know are just...well DUMB!  If you "google" ankylosing spondylits you read it's in the spine and starts in the hips..over and over...but even this is really not true!  For some AS folks, especially women, other joints are more involved than the spine/hips.

Things I've learned about MY AS--my eyes are horrific, seems my right side is a mess-my knee, shoulder and now elbow, I have terrible migraines, neck fusion/pain, that AS has caused inflammation in my vocal chords and around my vocal box---yes, my "back hurts"--but those things listed before the back hurt worse!  So--it would really be good if correct information was out there for folks to read.

So let me just end with AS has my body, but NOT me because I'm NOT going to just sit in my house and let this disease own me.  NOPE!  My 1st grandchild will be here any day!!!  I'm going to BE that grand mom!  So, AS this Mo (grand mom name) is not letting you win!  Lilly already has my heart!

Thursday, March 9, 2017

when your DR says, "you are making my brain hurt"

The moment the ophthalmologist puts his hands on the side of his head and says, “you’re making my brain hurt”.  Have you ever had this happen while at the specialist for a recurring visit? I have!  AS is in my eyes!

Living with ankylosing spondylitis (AS) has certainly been a challenge. When you’re diagnosed they really don’t tell you all that can happen.  Basically, they just tell you about the potential for spinal fusion.  They leave out that AS can damage every joint in your body!  They leave out that AS can affect your eyes, your heart, your lungs, can cause inflammation behind your vocal box (not fun for this singer) and yes, can cause death.

Why is it that so much information isn’t shared when you’re diagnosed?  One reason is simply that some doctors aren’t fully aware of what AS is and does.  Another reason is there is too much old data and information out there.  And lastly, AS effects each person differently.  Autoimmune diseases are complicated and hard to diagnose. There are those living with milder forms of AS and continue on with their lives, but for most of us living with AS, that’s not the case.  AS is a daily struggle…simple things like getting out of bed can be a struggle.  Nothing like starting and ending your day in severe pain and fatigue.  And no, I’m not talking about, “I’m so tired”.  We wish we were, “so tired”.  It’s a fatigue that only those with autoimmune/auto-inflammatory experience.  It’s a fatigue so severe that you can compare it to trying to walk in concrete.  You can not move without it taking every bit of strength you have left.  It’s a fatigue that even a nap won’t help. See those of us that are living with auto-inflammatory disease do not get rest.  Our bodies continually being destroyed and continually fighting…even in our sleep.

For the past 5 months, I’ve been recovering/healing from anterior cervical fusion and discectomy (spine/neck surgery).  The AS had done a number on my neck area and I had no “cusion” left between several discs.  The doctor went in and took out those discs, inserted some “titanium hardware”.  The plan is that the new bone that AS causes to grow, will fuse correctly around this hardware.  Basically, we’re helping me fuse “correctly” and not in a forward stooped position. 

Joys of living with AS is that plate and screws will NOT cure me.  It takes care of one problem.  I currently need knee replacement as well, but I’m just holding off as long as I can and the sacroiliac joints/hips aren’t “cooperating” either!

There is no happy ending.  There is no cure.  There is not one day of my earthly life that will be pain free. There are medications that help me “do life”.  Medications with horrific side effects, but medications I must take.

So, what can you do for me? Pray!  Learn about AS before you try and “heal me” (insert rolling eyes emoji).  Make sure you learn from the correct information that’s floating around, because so much of it is wrong. Don’t say, “my aunt Bee has that and is fine”.  Yay, for Aunt Bee, but AS effects each and every person differently.  There are over 80 different auto-immune diseases and they LOVE traveling with friends!  Which means, if you get 1, more than likely you’ll have others as well.  My current situation!

This photo was in my rheumatolagists office and actually was one of the best photos I’ve seen!  AS isn’t just arthritis of the spine (for some, the spine is fine).  AS can DESTROY your body!  AS does NOT discriminate in age, sex or race.  Anyone and any age can have AS….yes, even children (I know some who are suffering).

When you look at this picture, put my face on that female, and every label you see is not what CAN happen, but what IS happening to me.  For me, AS is in every single label.  This “hidden disease” is NOT hidden from me.  I deal with AS every single day….every single minute.   But,  I will continue to fight and I will continue to say….

AS has my body, but NOT me!

If you read the last blog and are curious about my current medication, Cosentyx…the jury is still out!  It’s not helping my eyes….

Saturday, April 23, 2016

why I blog? just my struggle and story! hoping to help someone!

You may wonder why I blog about this life-long Ankylosing Spondylitis (AS) journey that I’m on.  I didn’t just start right when I was diagnosed.  It took me some time to understand what I had just been told and also time to learn what exactly AS was.  I couldn’t even pronounce it!  Why do I have to deal with this for the remainder of my life?  There were so many questions and still to this day, questions seem to arise.

My blogging started simply because there were a few of us AS folks who had “found” each other via the internet.  We all seemed to have the same story to tell, but yet in some aspects our stories varied.  The disease itself may vary, but we were all suffering and finding it hard to locate correct information about AS.  We began sharing and even blogging on the same topics.  Even when we all had the same topic, it seemed our “blogs” were different and helpful!

During that time of “group” blogging, I realized I needed to share my personal journey with AS.  I wanted to help spread knowledge and information about a disease that I deal with daily.  A disease that was misdiagnosed at first and one that seems to be on an aggressive path.  A disease that stopped me dead in my tracks!  I realized the more knowledge that I gained, was exactly how I could “get ahead” of AS and be my best advocate!

It’s been over 10 years now since I was first diagnosed and wow I've learned a lot!  I’ve also been through a lot!  TNF medications were a must at slowing the progression of AS.  If you slow the progression, it will help with inflammation and pain.  My first TNF was Humira.  It wasn’t doing what it needed to do, so we added Methotrexate (MTX).  OK—a pause here—methotrexate is NOT fun!  The hangover that it gave me was horrific! But it was needed.  It was decided after several months that Humira wasn’t working, so we moved on to Enbrel (still on MTX).  After being on Enbrel for several months there was still no change.  There seemed to be no slowing and nothing working on my aggressive AS.  We moved to IV infusion, Remicade.  All the sudden there was improvement.  Now, don’t get me wrong here—there is NO cure!  But, this drug seemed to suddenly slow the disease and give me a few good weeks a month to just “do life”.  I had to stop the MTX, because of side effects and was switched to Arava daily.  Then it starts happening, AS fights as hard as I was and starts breaking through the monthly remicade treatments and the “good days” were becoming fewer and fewer.  My rheumy would up my dose of medication and it would work!  We continued on this journey for about a year until my Rheumy decided my AS was becoming resistant and the dosage I was on was too high.  Actually my infusion nurse had already commented on how high the dosage was for my body weight.  So, it was on to my last TNF, SimponiAria infusion.  It seemed to be doing its job, then all the sudden a MAJOR allergic reaction!!!  We had to find out what caused my allergic reaction and so all meds were stopped and slowly added back.  The reaction only happened the day after the SimponiAria infusion so my doctors decided it best to stop the medication.  I was devastated!  What now? 

I went on an older drug called Acthar.  This is a basically a steroid injection and we were just using this to “buy time” as we wait on new drugs to come out and to hopefully get the AS under control.  Acthar wasn’t really doing much to the AS, but it certainly was doing a LOT to my body—talk about side effects you do NOT want—the moon-pie face and weight gain!  Yes, I’m still on Arava and I’m really not sure it’s doing a thing! 

Finally the drug we’d been watching was approved and not just approved, but actually the first drug to come out approved and tested on AS patients, Cosentyx.  I’m currently going through the approval process and waiting…impatiently!!!  I need this medication!  I need something!  I will keep you posted as to how Cosentyx works for me.  I had to stop the Acthar.  I wanted to stop Acthar!  I wanted Cosentyx.  I wanted something that would slow this horrific disease!  Cosentyx is a new type of drug and hopefully, I’ll be on it with-in the next couple of weeks.  It’s odd to be begging…wanting…needing medication, but the last several months have been bad.  The AS is getting worse and there are less “manageable” days and more days where the AS wins. 

So, why do I blog…to share my journey in hopes that it helps others with AS, and also to share knowledge of what is happening to me.  Maybe my journey will help someone who has just been diagnosed or maybe someone who is where I’m at, wondering what next.  How this disease has affected my life with surgeries and medications.   It’s LIFE that we live with AS and its LIFE that I will fight, but I will always stay as positive as I can and not let AS win!
You can also check out this site for more blogs from me and others!

AS has my body, but NOT me!!!

Friday, February 19, 2016

Just trying to "do life" with AS and sometimes it's hard!

I think I always start with how long it’s been since my last post.  Also if you are the grammar police, then don’t read anymore!  I’m certainly horrible at grammar and spelling, and don’t need to be told!

 The last several months have been a real struggle for me.  In September I started having hives and I don’t just mean a little breakout.  I’m talking covered from head to toe and even down my throat.  Shots and steroids were given for what we thought was an allergic reaction….but to what?!  So, I went off meds and started adding one at a time—NOTHING!  Who knows what the cause was.  So, I go for my SimponiAria infusion in October and a couple days later…BAM covered again!  Shots and steroids and NO MORE SimponiAria. This has to be the cause.  Granted I do NOT want to be COVERED in hives again, but this was the LAST TNF for me!  I’ve been through all that are AS approved.  This did not make me happy, because I knew what was in store for me.  Those that don’t have a disease with no cure, have no idea!

My rheumy knew that I would need to be on something, so she went to an older drug called Acthar.  This is basically a steroid and she was hoping it would only be a temporary thing, since we all know that being on steroids long term is NOT good!  We were just buying time until something new came out or she could figure out what to do next.

Along comes November and my AS Jingle Jungle 5K.  You can read the last blog about it and here’s a video as well. 
And with the end of November, just like the end of September and October…HIVES!  More shots and steroids.  And we are now fighting for Acthar!!  Because every time you get a new drug, you have to fight…why?  Why do we have to fight for our medication and our care??!!!  Obamacare or the Affordable Care Act has totally RUINED our healthcare!!!  Don’t even get me started on how this is hurting us!!!  My insurance denied the Acthar and then I went into a patient assistance program.  They said no as well because of errors put into the system!  Basically we make too much for me to get this medication.  Ummm WHAT???!!!!  A VERY long fight and I finally was put on Acthar.  Seriously who makes enough to pay THOUSANDS for one shot??!!!   I am to inject 2 shots a week. 

Then comes December….and HIVES…again…and January and HIVES again.  The rheumy wants me to see an allergist, so I did.  I’m not allergic to anything and he brings up vasculitis…if you don’t know this term, it’s another autoimmune disease and yes, you can have more than one.  They usually like to have friends… ugh!  The allergist wants to send me to the ENT.  I sound horrible and it feels as if my tongue and throat are a bit swollen…just feels weird!!  Off to the ENT, and with the scope up the nose and down the throat (2 times)..I have inflammation behind my vocal box.  Other than that, he sees nothing else.  He does want to check my thyroid because it can cause the throat problems I’m having.  He also puts me on vocal silence…ummm what???!!!  I like to talk, but more importantly I LOVE to sing.  Thyroid checks out fine….and I’m now at the ophthalmologist and he’s checking my eyes (which aren’t doing great either) and says, yes, vasculitis causes episcleritis which I’ve been battling for a couple of years now.

Why the hives all the time….why do I sound as if I am a smoker who smokes a dozen packs a day (sorry if you’re a smoker and that offends you, quit! That’s my opinion on that).  Why does it hurt to sing and the more I talk the worse I get….

The rheumy does more tests…and I’m waiting…I know she’s testing for vasculitis and who knows what else.  During this time of slowly getting worse….I also know there’s a NEW DRUG, Cosentyx!  It’s AS approved and I want it!!  I NEED IT!  See with the New Year comes all new approvals, so for the end of January until now…Acthar was taken away as well…I have to go through the entire “denial/approval” process.  DUMB!  So, basically since September of last year, I’ve been on a spiral downward; Appointment after appointment, increasing symptoms and pain…unbearable at times.  I have hives/something…still on my fingers, at the joints and on my face. It’s itchy and my fingers/joints are painful.  Yes, I’ve been to the dermatologist…she’s waiting on another FULL BLOWN breakout….great….and then she could do a biopsy to get a confirmation. 

For now, my throat seems to be getting worse and my rheumy let’s me hear the dreaded words…AS can cause this as well…Yea, I know.  My symptoms and pain are increasing ….and I want to know why can’t I start Cosentyx???!!!  My rheumy said, she had no samples, had not been visited by a drug rep and been educated on the co-pay assistance program or the drug….and she seemed a bit peeved at my paperwork I had printed FOR HER!

So, here’s where I’ll leave you for now…I’m doing horrible if you want to know.  And yes, I know I look good…don’t look sick.  The one thing that gives me JOY is singing and that’s being taken away…by the devil!!!  I’ve called the drug company MYSELF!!  I’ve asked is there a rep in my area??!!  Why yes, there is and there are DRs already prescribing the new drug.  Here’s MY DRs Info...Can you send a rep?  Yes we can!!!  Call back in a week and we’ll give you an update.

See if you have a disease with NO CURE and only managed care…it IS YOUR FULL TIME JOB.  Nobody understands what you go through, the pain you’re in, or the fatigue (it’s not “I’m tired too”…you have no idea how fatigued we are).  You MUST fight for your health as well as your care.  It’s up to you to inform EVERYONE, even doctors sometimes. 

At times it may seem as if the disease is winning, but that means you just need to fight harder!  It even means that you think about what truly is important for you to “do”…because those of us with autoimmune diseases know; we only have so many “spoons” in a day!  Until you can get your disease managed, now just because I’m saying managed, that doesn’t mean remission (there’s none for AS) and it doesn’t mean you’ll be cured (there’s NO cure), it doesn’t mean you won’t feel pain (there’s always pain) it just means you can DO LIFE; you have to figure out, if I do this today, how will I feel…or can I do this today.  It can get frustrating knowing that you may need to give up “things” so that you can do other “things”.  But…you must remember…KEEP FIGHTING!  So, I leave you a bit open here since I don’t have test results, but my next post will be a bit sooner than this one!

For now……

AS has my body, but NOT me!

Tuesday, September 29, 2015

Full time job, AS jingle junle 5K

Having an autoimmune disease can be frustrating at times!  There’s the constant changing or adding of medications in hopes of figuring out what will slow the progression of the disease.  What will actually “work” for you can be complicated and challenging to figure out.  Then you have to factor in what your insurance will allow you to actually have.  Why this is even a question blows my mind!! If your doctor prescribes a medication for you, then your insurance should have NO SAY as to whether you should “get” that medication or not.

Every week begins with the glance at the calendar to see what doctor or doctors I have appointments with.  My sister once told me, “Your health is a full time job”.  Yes, it is!  Keeping up with the all the doctor’s appointments, fighting for medications, remembering if you took your medications, and then just making it through the day while in excruciating pain and the worst fatigue you’ve ever felt, IS a full time job. 

Currently my list of meds seems to be getting longer! There’s SimponiAria every 4 weeks. It’s an infusion. Pretty short infusion only lasts about 45 minutes.  The long part for me here lately is finding a vein and then after finding it, praying it doesn’t blow!  I’m also still on daily Arava and I’ve recently added a weekly injection of methotrexate (MTX).  Anyone who’s ever taken the MTX knows it can give you some serious “hangover” side effects. All of these drugs are to slow the progression of the AS, and help with the pain. There’s a daily list of other drugs that I also take and 3 eye drops to help stop the AS from ruining my eye sight! Unfortunately, my AS has decided it likes my eyes!

And because of all those meds, there’s a monthly check of labs! Gotta make sure that my kidneys and liver are functioning properly and that I don’t have any infection. Scary meds that help me do life, but those same meds can kill ya! What do you do??!!! Stay on top of it and keep everything monitored at all times!  It’s a full time job!

The Spondylitis Association of America is a great tool for those of us with ankylosing spondylitis (AS). They are a non-profit helping to raise awareness and just like me hoping for a CURE for this horrible disease (and related diseases). As with any organization you donate money too, you should look where those donations go.  A lot of these have high CEO salaries and little money goes towards research. With the SAA, I know where my donation is going and I can be confident that they are working hard to make sure it’s headed to the right place! That’s why, I am currently trying to raise funds for the SAA and need YOUR HELP!


Me and my girls will be participating in a 5K on Nov. 7th. It’s the Disney Jingle Jungle. We decided that we would rename this to the AS Jingle Jungle and since it’s a 5K, try and raise $3000 to go directly to the SAA. The question that may pop in your head is, “Can you walk a 5K”? My answer is, “no”. I cannot walk a 5K, BUT I am determined to do this and my girls are determined to help me.  There’s no training that I can do and I will pay dearly for it, but the feeling that I will get when I cross that finish line holding my daughters hands to DEFEAT AS AND HELP FIND A CURE! Well, it will all be worth it! I’m asking for your help by donating any amount to the SAA.  Donations are tax deductible and help millions like me who suffer with this horrible disease. Yes, there are MILLIONS!  Please help me reach that $3000 goal. ALL donations go DIRECTLY to the SAA in hopes that one day we will have a CURE!  You can donate, read more on my story and the SAA at


For now...

AS has my body, but NOT me!!!!