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!

http://www.thisaslife.com/staying-healthy/how-i-stay-positive-about-my-as/
 
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

www.crowdrise.com/ASjinglejungle




For now...

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

 

 


Thursday, July 23, 2015

new house, new med, and raising $3000 for AS!


It’s been a LONG while since I last “blogged”!  We have moved to our new house.  Having an autoimmune disease that has no cure, causes joint pain, and fatigue like you’ve never known—among other things—makes life hard, but can make things like moving…hmmm I don’t even have a word!  I do LOVE my new house.  I love that it’s ours!  I love the fact that my hubby built it for ME!  Yes, we did think about me, this disease and my future in some aspects of our home.   Why have a tub in the master when nobody will get in it?!  Make the shower big—big enough that if a shower chair is needed, there’s room.  Make the door ways handicap accessible.  Yes, my home is ready for whatever ankylosing spondylitis, AS, throws at me!  This is NOT giving in to a disease, but being proactive!  Saving money when building our home!  And hey, it made for moving furniture VERY easy!! Haha
 

I’ve also gone through some frustrating medical/medicine changes.  I’m currently on SimponiAria.  This is the LAST TNF for me that is approved for AS.   SimponiAria is an IV infusion that I get at the GA Cancer center every 4 weeks.   Have you ever gotten an explanation of your benefits paid for your services?  Well, let’s just say that I’m thankful to have a primary and secondary insurance!  Yes, I do have 2 insurances and the reason AS.  Oh, and I had these BEFORE Obamacare so don’t go there with me.  It was better until OCare passed.  Now, they will just MAKE you have to purchase insurance, but here’s the kicker....the insurance DENIES things!  Oh, yea!  So, the idea that if you have a pre-existing condition you’ll never be denied insurance again….well, LIE!  You just are FORCED now to purchase a worthless piece of paper!  OK—stepping off my soapbox now!  Back to the benefits paid question—have you ever seen what your medicine cost?  So, my every 4 week visit—according to my explanation of benefits letter—only $16,721!  How’s that sound?! CRAZY!!!  That does include blood work they do to make sure my organs are still properly working and yes, we have to check this, I am putting poison in my body that can kill me—I just literally LOL’d at that—but it’s true.  Can’t live without it, and must check to make sure it’s not killing me!  Hmmm  It also includes chemo which must be mixed in my IV—I do get 2 bags so that was new to me when I first saw that.  It’s a small/low dose, but whatever….So, do I think this last TNF is working for me?  Well, I’m really not sure.  I do know that it does something!  Without any TNF…it’s bad.  I’m following what’s coming out soon and there are new drugs that are in differing phases for AS.  Hopefully they will be released soon!!!  We need more knowledge and education! 

Knowledge and education is the key for folks like me with AS to be able to live a “doable” life.  A “manageable” life.  I would LOVE to wake up and be pain free one day.  I would love to not have thoughts of will I be able to do that or can I make it.  Those like me would LOVE nothing more than for folks to “get it”!!!  To understand that what they are selling will NOT heal us or rid us of medications that we MUST take to slow the progression of a disease with NO CURE.  Read that last sentence again.  See, those medications can’t even heal us.  There’s NO REMISSION and NO CURE, just good days and bad days.  So, I FIGHT AND FIGHT I WILL!  Fight to LIVE and fight for AS.  Yep, I said, fight for AS—for education, knowledge and for everyone to know this name; ankylosing spondylitis.   I’m tired of all the incorrect “facts” in doctors’ offices (just one-its 4-1 male) and being spread around (diet helps cure you)—and this makes me what to start typing a list of incorrect facts—but where I’m headed is my fundraiser for AS.  This November I’m headed to participate in the Disney Mickey Jingle Jungle 5K.  My body will NOT let me run a 5K or walk it for that matter, but you better bet I am going to try!  With the help of my girls we will BEAT AS and cross that finish line together.  I am trying to raise awareness and $3000 for AS.  Your donation will go DIRECTLY towards the Spondylitis Association NOT me!  This is not a “go fund me” for my trip!!  ALL, EVERY penny goes to SAA and its efforts to help those like me.  This organization is an excellent help in providing awareness and education and just maybe one day a cure for AS and spondylitis related diseases.  
Please go to http://www.crowdrise.com/ASjinglejungle to donate and read all about the 5K. That link will also provide you information on the Spondylitis Association of America which you are donating too.  ALL DONATIONS ARE TAX-DEDUCTIBLE. 
The Spondylitis Association of America (SAA) is the only nonprofit organization in the US dedicating all of its resources to improving the lives of people with spondyloarthritis. SAA is committed to advancing medical research into the causes of this often overlooked and critically underfunded family of diseases with the aim of facilitating earlier diagnoses, developing more effective treatments and effecting more positive disease outcomes. The organization’s mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest.  For more information, visit www.spondylitis.org. 
Will you help me get to that $3000? Any amount is greatly appreciated and again goes directly to the SAA.  Also, ALL donations are tax-deductible (US citizens need to know this one!!).   I will keep you updated closer to the 5K and of course after.  It will be a challenge for my body to complete and the pain will be horrendous…but as I have always ended and say

AS has my body, but NOT me!!

Friday, March 20, 2015

being denied healthcare..yes! and I'm an american!

First-if you are the grammar and spelling police...you will hate me, but I blame obamacare! read on! LOL

Did you catch that headline? If you follow along on this blog journey (of a mess) of mine..then you'll recall that I commented way back when Obamacare/affordable care act was passed that I was scared that one day I'd be denied. I also had a "healthy 20 something" comment on facebook how wrong I was and I how fortunate we were that we'd never be denied healthcare. Well, I did delete said "healthy 20 something" because I couldn't take his ignorant comments anymore, but yea...here we are..I'm right and yes, you're still ignorant.

OK--I might not be denied "purchasing insurance" but that's not "healthcare". Let's get this right folks. We are now FORCED to buy a piece of paper that's..useless. I had good "healthcare" until obamacare came along. I had good healthcare until all the changes. My husband works for a small family owned business who now suffers greatly because of all the "change" that obamacare made. And "affordable"...really??!!  We now have an individual deductible of $3000.00 that you have to meet first (this isn't doctors copays). His company pays THOUSANDS a month for insurance...what??!!!  Welcome to America family friendly owned businesses--PAY UP or be fined! So, thankful for this business that does pay up for my family, but what about those that close down because they now can't afford it.

     Let's get to how I'm being denied healthcare--again, I do not think healthcare is an insurance policy. If you do, then stop reading now because we will just need to agree to disagree. My doctor wanted me to go on acthar which is an older drug, but really my last resort. I've failed all other TNFs for my ankylosing spondylitis and iritis. Acthar would be a different class of drug and we were hoping this would help with my disease. If this is your 1st time reading my blog and you just went what's that..then please go back and read or google it (but probably most info you read on line will need updating-not always accurate with a disease that's on the "back-burner").  I found out that my first injection of acthar was going to cost me over $8000.00 WITH insurance and my rheumy wanted me to inject 2x a week..wait...WHAT??!!! OK--even if the insurance approved this, how could ANYONE afford this?! My 1st thinking..oh, well..that's the end of that--then talking further with the acthar rep, I was informed that if my insurance denied the medication, I would go into a support program and possibly get the drug for FREE. Well, hallelujah! Because that was the only way I'd get it.  The insurance did DENY the medication--FOLKS DENIED HEALTHCARE! My insurance-Coventry-sent me a letter that read, "denied because it was NOT medically necessary" umm, what?! I just LOL'd typing that. I have a disease with NO CURE and am failing all drugs that are AS approved, this one IS AS approved and it's not medically necessary. Hmmm OK?!
     Well, not that I minded that stupid letter, because I couldn't afford the medication in the 1st place WITH insurance. So, on to the FREE meds--the lady calls me from the acthar assistance support line and says she'd like to "pre-qualify" me and ask me questions about my HUSBANDS income. I can't work because of the disease. Why does my husbands job/salary matter here? Why am I being punished for my husband actually having a JOB and supporting his family? I think you know where I'm going here. He makes too much...what???  Really...so, our modest living, paying for all my doctors visits, medications, our daughters college, living check by check, like most Americans...we don't qualify.  BECAUSE HE WORKS AND HAS A JOB! ahhh so angry typing that. DENIED HEALTHCARE...WELCOME TO AMERICA! I feel like I just filled out the stupid FAFSA..ugh! Penalized for working and supporting your family..got no job and get it free...yup, it just typed that! Let me back up and tell you that when the lady that "pre-qualified" me, asked when doing the "pre" qualifying..nothing about expenses..nothing. Just asked what hubby's salary was and then said, you're denied. Now, they are saying I can do an appeal--send them a letter saying why I need the medication, proof of salary (really you already asked that), all my medical bills for 2014 and the list goes on and on....really...SMH!!!! Let's make it easy for a sick person...ugh and the letter of "necessity"....I just want to inject myself with a drug 2x a week just because...really...ugh..SMH!

Where does this leave me...having a disease with NO CURE. Living in constant pain as my body destroys itself from the inside, currently on no medication to stop the progression of my AS. So, for now, we are going back to the last TNF I was on, simponi. I was on the injections but saw no improvement. We are going to the IV infusions-simponiARIA. For those of you that are close to me, you know that the name of this drug is enough reason for me to even want to give it a go. I am a Jesus lover and truly believe that God's in control not anyone else. I've given this horrible disease to Him. But..am I loving that "aria" name in this drug...YOU BET! If you don't know me, it's my oldest daughters name!  So, for now, I'm praying that my insurance won't deny me "healthcare" and will approve this medication, but more importantly, I'm praying that it will work! It's the last TNF that is AS approved for me--been through them all. Also, praying that more education and awareness will come for ankylosing spondylitis. That information will be corrected that's out  there--that's wrong. Even saw it at the rheumy this week on a poster. It had several types of "diseases" listed and ankylosing spondylitis was on there, very small in corner, only 4 things listed and the last said, "predominantly affects men". It was all I could do not to pull out a pen and scratch through that comment and put it's 50/50. We MUST get correct education and knowledge out. We need more medication approved for AS. but for now....

AS has my body, but NOT me!!!

Saturday, February 28, 2015

new "OLD" med and same "OLE" problem

I write a great blog when I'm laying awake in the middle of the night.  The only problem is I write that blog in my head as I'm trying to go back to sleep.  For those of us who suffer with 24/7 pain, our bodies NEVER rest (sleep) so we often lay awake in pain sometimes for hours.  I really did have a great blog all completed in my head last night..thing is, can't even remember any of it!  Just know it was a great blog! ha That's the other thing those of us who suffer from fatigue and chronic pain face, "brain fog".  It's real folks.  I had to pause a second just to think of the term-brain-fog!  It was lost!  So, here's the crappy blog I can think of right now...LOL.  Just me and AS....

I often chuckle to myself when folks mention how "tired" they are.  If only they knew the "true exhaustion" felt by those of us suffering with ankylosing spondylitis.  It's not a "tired" feeling, but a feeling as if you are stuck in quick-sand and can not move.  You struggle to lift your leg and it feels as if you are in concrete.  You literally can NOT get up or move.  And it's not oh, I'll just sleep for a bit, because you know as well as I do, there's never true sleep to recover and refresh.  What I'd give to wake up and feel refreshed, but what I feel is pain and exhaustion.

For now, If you've been following, you know I've been changed to my last AS approved TNF, simponi. I give this to myself in shot form.

Yep, bigger than my hand and you are correct in thinking that is 2!  One dose wasn't working..yea, me?! So, we've upped it to 2 injections at a time. There is another way to administer simponi and that's by IV. But, my rheumy would've needed to see a little improvement from the shots first.  So, for now, she's ADDING (along with the simponi) a new "old" drug.  This one is called Acthar.  This is a steroid injection.  I will self inject 2 shots a week (once approved by the "powers that be").  I'm not exactly sure how I feel about this "new-old" drug.  Rheumy says it has less side effects than pills.  But, those of you who are or have been on steroids know the side effects are AWFUL!  The 2 I do NOT want, weight gain and moon-pie face!!!  Who wants those EVER!  And let's face (pun intended again) steroid injections HURT LIKE CRAZY and I have to give these to myself.  Medicine thick as pudding....ugh! So, not looking forward to this, but sooo need some relief in the eye/head/neck area.

Also--if you follow along you know my eyes have been an "eye-sore" (pun intended) for me. I go through migraine medicine like crack!  Just cut my head off from the shoulders please.  And let me add, this medicine ain't cheap folks.  But, it works!  I use Frova and my insurance doesn't cover the drug so yea! But, trust me, you'll do what you have to do when something works and yes, please don't ask if I've tried blah..blah. I've tried them all.  My insurance has seen the list and doesn't care that frova is the only one--they don't want to pay that high price, so yea, suffer in pain or pay up--that's their philosophy.  Thanks Dad and Vickie for the help in this area!

Ankylosing spondylitis DESTROYS from the inside.  You can't see it, but I can FEEL it!  I feel it every single minute of every single day.  There's no "end of the tunnel".  There's no last treatment.  There's NO CURE.  There's only a daily fight...and fight I will!

AS has my body, but NOT me!

Thursday, January 15, 2015

past time I know...sometimes it just gets old

Living with a chronic disease can sometimes get old fast! I was recently asked, "do you sometimes cry"?  Yes, I have. I have even said, "it can't hurt any worse today" and I quickly remind myself, yes, it can. When those tears fall...I then say, alright enough of that, AS-you will NOT win!

I do believe in the power of prayer and the power of positive thinking. I've said it before, will I be healed, yes! It just might not be in this earthly body, it may come in a heavenly form. As for positive thinking, I am a firm believer that if you are in a constant state of "woe is me"...well, then it will consume you! I will NOT live my life that way!  That's not just about health, but about everything!  I assure you there is someone who has a "woe is me" that is NOT posting, that is WAY worse than your "woe is me".  And yes, I'm including myself!

So-this disease or two of mine...the ankylosing spondylitis, yea, it's just not my friend and LOVES causing havoc on my body and my life! For those following along on this journey of mine, you know I'm down to the last "approved" medication, simponi. Is it working? Well, not exactly! So, we are doubling the injections! Yes, doubling! I get to inject 2 of those huge suckers--one for each leg, hoping that it will hold for the month! We shall see. If not, we'll go to the IV form which is called simponi ARIA (hmmm ARIA-no comment needed for those that know me).  Well, I guess that's all I have on my AS and my drugs..that I'm blowing through like candy! AS winning so far ugh!

On to the eyes--the eyes are part of the biggest problem I have going on. Another of the reasons I'm blowing through drugs like candy. Why can't we get the eyes under control. Why am I losing eye-site so quickly and these flares in my eyes not stopping?  AS LOVES my eyes!  Just the other day, I had 2 teen girls say, one of your eyes is darker than the other...that was the eye that was hurting the most that day. And yes, it just jumps from eye to eye right now. So, until the meds work, I suffer from a dull steak knife being jabbed in my eye with sand being rubbed in it--yea, that about sums it up and no you can't clear it up. OK, that's the eyes..AS winning so far ugh!

The debilitating migraines--have I even mentioned these, can't even remember. These are caused by 2 things..the damage that the AS is doing in my neck/nerves/spine and the damage it's doing in my eyes. So, yea...there's that. AS winning so far ugh!

The pain in the "joints"--yea, the "joints" not just the back, but other joints as well--the hips have been really bad and then there's the knee that's pretty much gone. The neck/back of course always hurts. Until the meds start working AS will continue to win by destroying my body from the inside, so yea, you can't see it and no for the most part...I try not to let you see it. Although there are days and times that I wish for one moment you could see it--not feel it, but see it! I wouldn't wish this pain on anyone.

Fatigue--it's real folks--it's not just being tired. When your body is in a CONSTANT mode of destroying itself..it NEVER SLEEPS! It never stops. There are times I feel as if I can not even lift my head. Sometimes I literally am afraid of sitting down....the fear of not being able to get back up...it's real. Again, this isn't the same as "I'm tired".

So, tired of seeing misinformation about AS--that it's a mans disease, that it only affects the spine--that you MUST have sacroiliac joint damage FIRST or spine MRIs or X-rays before you can be diagnosed.  All of this MUST change! We need more medication and knowledge and information in doctors hands so we can be treated properly! An example of what just happened to me--I'm at the neurologist and I was commenting on how AS had done so much damage to my shoulder (had surgery 2 years ago) and he says, "I didn't know it damaged other joints"...WHAT??????????  I said, yes, it doesn't just affect the spine. ughhhhhhhhhhhhhhhhhhhh  This is a problem!!!!!  A HUGE problem. Now, granted my rheumatologist did say, well his specialty is neurology not AS/disease, but still--I want all the doctors I see to know MY DISEASE!  And yes, I will probably find a new neurologist because of this!!!  I'm seeing him because of how the AS is affecting me, he needs to know AS!  rant over AS winning..ugh!!!!!!

The holidays--schew--I learned some things! Until my AS is fully under control, next year (or should I say this year) holidays will be a bit different. 

I do get a LOT of suggestions for "things" that might help me. All are from folks that I know care. But, there's not a magic diet, or drink, or oil that will help cure me. Some of these things we all should be taking a close look at, even healthy folks, before we put in our bodies. Some things can interfere with medications that I MUST take. So, yes, I've actually talked to the doctor about every suggestion that I get. Those of you who follow my blog and do have a chronic illness, please check the ingredients very carefully (even those not listed) of what you are putting IN your bodies and ask your doctors before adding. Also, NEVER stop medication cold turkey. Some meds need to be "weaned" out of your system.  Here's my FREE 2 cents on being healthy--shop the perimeter of the grocery store. Try and eat healthy. Don't put sugar substitutes in your body. Cut back on sugar. Use whole wheat, eat low carb. If it's "man made"...really how healthy is it..really??  Can it be grown?? Do what works for YOU!  And don't super size it! hahaha

For now and for me currently, I know I said AS winning...but I always say and will end this post the same way...

AS HAS MY BODY, BUT NOT ME!!!