Day Ninety five – Appily Infused.

Art Apple - Day Ninety five

Art Apple - Day Ninety five

Aaaaaahhhhhhh!  I received my Remicade infusion this afternoon.

The vitality this amazing drug gives me is slowly working its way into and around my cells, blocking all those crummy little immune attackers that are friends to most people’s bodies.  In mine, they go haywire and have a big party.  Without the big pac-man, TNF blockers, I have an immune response that is slowly trying to fuse my spine together (among many other lovely things.)  Before I started taking the Remicade – over 4 years ago now – I couldn’t function from the pain.  I was on high doses of anti-inflammatories, nerve/seizure meds, and heavy duty pain killers including the Fentanyl patch, and a chemotherapy drug called methotrexate.  In February I will celebrate a three year anniversary of going cold turkey off all pain killers (well – I don’t count Advil) and I now only need my infusions, but…

Want to know what keeps me up at night? – – – thoughts of the Remicade stopping to work or losing the ability to be able to get it for insurance or financial reasons.  I put six little vials on todays image – they are $700 each and that doesn’t include administering the drug or various other costs associated with this medication.  It’s terrifying to even talk about it – but I will because people need to know what this thing called AS does to not only our bodies but our lives.  And, I’ll keep talking about it because such an amazing medication needs to be available to more people who are suffering and have no access to a medication that will give them their lives back.  I’m fighting for them – in perhaps an unconventional way – but they – YOU – are what keeps me going even when it’s easier to just stop.

Until tomorrow.

Jenna

Day 95 was created with pen & a blush of color.

Comments 12

  1. Amanda Unrein wrote:

    Love the post/apple today! Happy to hear you are on the road to some relief today!! Wishing you a pain-free day!!

    Posted 04 Jan 2011 at 6:14 am
  2. Jenna wrote:

    Thanks Amanda! Can’t wait to be blogging buds for AS Awareness on http://www.thefightlikeagirlclub.com/ !!!

    Posted 04 Jan 2011 at 9:55 pm
  3. Diane wrote:

    I am so glad you got your infusion. Is this the type of medication other patients would have available help from prescription assistance program. It’s a lifesaver for me for the epilepsy meds. Love, sis

    Posted 04 Jan 2011 at 6:41 am
  4. Jenna wrote:

    Me too Diane! I had a bit of a difficult day today but I’m sure I’ll be much better tomorrow. There are a lot of prescription programs but some of them can difficult to qualify for if you are on commercial insurance. There is a program that is helping us pay the high deductible offered by Centacor and Remicade called Remistart. It will be a big help. I’m so glad that you have one like this for your epilepsy meds. Love you – Jenna

    Posted 04 Jan 2011 at 9:54 pm
  5. Marilyn Kamna wrote:

    Hey I just found this site through a New FB page and website called United Voices for Ankylosing Spondylitis.

    Love what you are doing, thanks for the inspiration!

    Posted 04 Jan 2011 at 7:15 pm
  6. Jenna wrote:

    Hi Marilyn – I’m so glad you found me! I’m a bit new to blogging but I do have a FB page – Art Apple A Day – I post each daily apple there too. I love United Voices for AS!. If you’d like you can sign up to get your daily apple in an email (there is a sign up on each page 🙂 I hope you stop by again soon. Jenna

    Posted 04 Jan 2011 at 9:15 pm
  7. Marilyn Kamna wrote:

    I will, I’d like and apple a day it will reming me to Create Every Day as inspired by the link I found here, I really do find Art Therapy to be so healing and ahve always wanted to do one a day…maybe this will light a fire inside. Thanks for th e inspiration 🙂

    Posted 04 Jan 2011 at 9:21 pm
  8. Marilyn Kamna wrote:

    Sorry about the typos, I have AS/chronic Iritis, and my sore little fingers do not always go where my sore eyes thought they went 🙂

    Posted 04 Jan 2011 at 9:33 pm
  9. Jenna wrote:

    I so wish you didn’t have AS and no worries about the typos 🙂 I too deal with iritis but haven’t had a flare since being on Remicade but I know the pain and difficulties that come with that too. I love the Creative Every Day challenge – I found it by looking for others who were wanting to make art each day and I check in and post to that site each week. See you soon! Jenna

    Posted 04 Jan 2011 at 9:41 pm
  10. Mom wrote:

    This day is a hard one on which to comment. We, too, are saying and feeling aaaaaaaaaahhhhhh…
    We hate/abhor/seethe at/to see the difficulties you have when waiting an extended period for your “rat Juice”! God bless those little micey rodents! And we all project together the fear of there being no more mice. We love you. And now, on Thursday, when you are on your way to visit us, we are breathing a sigh of relief that you are so much better. XOXOXOXO

    Posted 06 Jan 2011 at 11:48 am
  11. Arish Bukhari wrote:

    Really nice jenna…

    Posted 08 Jul 2011 at 4:49 pm
  12. Jenna wrote:

    Arish,
    Thank you for commenting. Did you know… you are one of my favorite AS advocates? Keep up the great work on Apples For Pakistan!

    Posted 08 Jul 2011 at 10:02 pm

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