Just trying to do existence with AS and every now and then it is hard!

I think I continually start with how long it’s been due to the fact that my ultimate put up.  Also in case you are the grammar police, then don’t examine anymore!  I’m without a doubt horrible at grammar and spelling, and don’t want to be informed!



 The last several months have been a real conflict for me.  In September I started having hives and I don’t just imply a little breakout.  I’m talking covered from head to toe and even down my throat.  Shots and steroids have been given for what we notion become an allergy….However to what?!  So, I went off meds and commenced adding separately—NOTHING!  Who knows what the motive turned into.  So, I go for my SimponiAria infusion in October and a pair days later…BAM protected again!  Shots and steroids and NO MORE SimponiAria. This needs to be the reason.  Granted I do NOT want to be COVERED in hives once more, however this changed into the LAST TNF for me!  I’ve been thru all which can be AS permitted.  This did not make me happy, because I knew what was in store for me.  Those that don’t have a disease and not using a treatment, haven't any concept!



My rheumy knew that I would want to be on some thing, so she went to an older drug called Acthar.  This is essentially a steroid and she was hoping it'd simplest be a transient element, due to the fact we all understand that being on steroids long time is NOT appropriate!  We had been just buying time till something new came out or she could determine out what to do next.



Along comes November and my AS Jingle Jungle 5K.  You can study the remaining weblog approximately it and right here’s a video as properly.





And with the stop of November, just like the quit of September and October…HIVES!  More photographs and steroids.  And we're now combating for Acthar!!  Because each time you get a brand new drug, you need to combat…why?  Why will we should fight for our medication and our care??!!!  Obamacare or the Affordable Care Act has absolutely RUINED our healthcare!!!  Don’t even get me commenced on how this is hurting us!!!  My coverage denied the Acthar and then I went right into a patient assistance program.  They stated no as properly because of errors positioned into the gadget!  Basically we make too much for me to get this medication.  Ummm WHAT???!!!!  A VERY lengthy fight and I in the end turned into put on Acthar.  Seriously who makes sufficient to pay THOUSANDS for one shot??!!!   I am to inject 2 pictures per week.



Then comes December….And HIVES…again…and January and HIVES again.  The rheumy needs me to peer an allergist, so I did.  I’m no longer allergic to some thing and he brings up vasculitis…if you don’t recognise this term, it’s any other autoimmune disease and yes, you can have multiple.  They normally want to have friends… ugh!  The allergist desires to send me to the ENT.  I sound terrible and it feels as though my tongue and throat are a piece swollen…just feels bizarre!!  Off to the ENT, and with the scope up the nostril and down the throat (2 times)..I have inflammation in the back of my vocal container.  Other than that, he sees not anything else.  He does need to test my thyroid due to the fact it can motive the throat troubles I’m having.  He also puts me on vocal silence…ummm what???!!!  I like to talk, however extra importantly I LOVE to sing.  Thyroid assessments out excellent….And I’m now on the ophthalmologist and he’s checking my eyes (which aren’t doing extremely good both) and says, sure, vasculitis reasons episcleritis which I’ve been combating for multiple years now.



Why the hives all of the time….Why do I sound as though I am a smoker who smokes a dozen packs a day (sorry if you’re a smoker and that offends you, give up! That’s my opinion on that).  Why does it harm to sing and the extra I communicate the worse I get….



The rheumy does extra tests…and I’m waiting…I understand she’s checking out for vasculitis and who knows what else.  During this time of slowly getting worse….I also recognise there’s a NEW DRUG, Cosentyx!  It’s AS accepted and I want it!!  I NEED IT!  See with the New Year comes all new approvals, so for the quit of January until now…Acthar turned into taken away as nicely…I ought to go through the entire “denial/approval” technique.  DUMB!  So, essentially due to the fact that September of last yr, I’ve been on a spiral downward; Appointment after appointment, increasing signs and pain…unbearable at times.  I even have hives/some thing…nevertheless on my fingers, at the joints and on my face. It’s itchy and my arms/joints are painful.  Yes, I’ve been to the dermatologist…she’s waiting on some other FULL BLOWN breakout….Top notch….And then she may want to do a biopsy to get a affirmation.



For now, my throat seems to be getting worse and my rheumy permit’s me listen the feared phrases…AS can purpose this as nicely…Yea, I understand.  My signs and symptoms and ache are increasing ….And I need to realize why can’t I begin Cosentyx???!!!  My rheumy stated, she had no samples, had not been visited through a drug rep and been knowledgeable at the co-pay help application or the drug….And she or he appeared a piece peeved at my office work I had revealed FOR HER!



So, right here’s wherein I’ll leave you for now…I’m doing terrible in case you need to know.  And sure, I recognize I appearance precise…don’t look sick.  The one factor that offers me JOY is making a song and that’s being taken away…by way of the satan!!!  I’ve called the drug business enterprise MYSELF!!  I’ve requested is there a rep in my region??!!  Why sure, there may be and there are DRs already prescribing the new drug.  Here’s MY DRs Info...Can you ship a rep?  Yes we can!!!  Call returned in per week and we’ll provide you with an update.



See when you have a ailment with NO CURE and handiest managed care…it IS YOUR FULL TIME JOB.  Nobody is familiar with what you undergo, the ache you’re in, or the fatigue (it’s not “I’m worn-out too”…you don't have any concept how fatigued we're).  You MUST combat for your health in addition to your care.  It’s up to you to inform EVERYONE, even docs every now and then.



At times it is able to seem as though the disease is prevailing, but that means you just want to combat more difficult!  It even way which you consider what truly is critical so that you can “do”…due to the fact those people with autoimmune diseases recognise; we handiest have so many “spoons” in an afternoon!  Until you could get your disease controlled, now just due to the fact I’m saying managed, that doesn’t suggest remission (there’s none for AS) and it doesn’t suggest you’ll be cured (there’s NO treatment), it doesn’t imply you won’t sense pain (there’s constantly ache) it just manner you could DO LIFE; you need to parent out, if I do that these days, how will I experience…or can I try this nowadays.  It can get frustrating understanding that you can need to surrender “things” so that you can do other “matters”.  But…you have to do not forget…KEEP FIGHTING!  So, I leave you a chunk open right here given that I don’t have check effects, but my subsequent submit might be a bit earlier than this one!

AS has my body, but NOT me!
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