Infusion day always feels a little like human pin cushion day!
My infusion nurses are awesome and my nurse today knows and empathizes like few could – you see, she too has AS.
I’ll be feeling great in no time – love my Remicade but it does knock me flat for a day or two so I’m going to cut my post a bit short tonight…
Until tomorrow.
Jenna
Day 329 was created with a piece of 140lb water color paper (nice thick strong paper) a bit of beige metallic embroidery thread and lots of pin pricks!
***Added 8/26/2011 – I was so tired last night so I didn’t let you all know where the inspiration cam from for this apple but I want to make sure to link now. Here is the amazing work that inspired this apple. Her pieces are much more involved and intricate and I’d love to experiment with this technique more and learn how she does what she does!
My Rheumy mentioned infusions as a possibility for me on my last visit. I asked her if it my diabetes was a problem since I’m already suceptible to infections. She said she has other dianetics on biologics. But first I have to get my new Cymbalta med up to 40 mg. I’m currently on 20 mg; the side effects hav
(Pressed submit somehow by mistake)
…..the side effects have prevented me from increasing just yet. I’m scheduled for a catscan of my pelvis. My next step is prednisone, possibly at the end of October. If that doesn’t help, we’ll see. The potential side effects of biologics scares the bejesus outta me but I’m so incredibly wiped out at this point (been dealing with this flare for at least 5 months) that I’m game for anything at this point. I had a reprieve last week but AS is kicking my butt again. I feel like I can’t handle this much longer. :-/ and I SO want to be up to my visit to NYC at the end of September!
Melissa:
I can’t imagine potential side effects are any worse than the constant pain. Jenna has been doing great on the biologics, and she’s been on them for 6 or 7 years. She took prednisone for a while, and was actually more concerned about the long-term effects of prednisone than her Remicade. Of course, I’m no doctor, you and your rheumatologist need to decide what’s best for you. Good luck!
Prednisone would definitely be a short term remedy for me. My grandmother was on it for a few years and developed osteoporosis. She ended up with a broken back (6 months of lying flat on her back to recover) and then a broken neck. O_o A crap dr. put her down that road.
Thank you for your comments, Doug. They’re much appreciated! 🙂
Melissa,
You’ve been going through quite a time – I’m so sorry 🙁 I’m glad Doug weighed in. He has seen the difference that the biologics have made for me and to be quite honest – at the time I was willing to do anything to be better and the risks of a future issue – for me, seemed worth it. I wasn’t living – it didn’t feel like living so, I started on one of the self injectables – and they started to help so it gave me a glimpse of feeling better and I kept pushing for a medication that worked better and better for me personally and that is how I ended up on Remicade. I will be “celebrating” 5 years on it at the same exact time I’m making my last apple 🙂 – I think my first infusion was actually mid Oct. 5 years ago but it seems like a great time to talk about it 🙂 With all of this said… I feel it is truly a personal decision and one to not decide lightly (as I may have done) – I had no children to think of and I had stopped working years before due to my health issues. Looking back I was in a desperate and critical situation. I was losing my ability to remain positive and it was becoming harder and harder to keep fighting. I know of so many people helped by biologic medications – and you do hear of the occasional story of tragedy linked to them so I don’t want to discount that at all. But, let me relay this to you… I was in a small infusion room at my Doctor’s office yesterday. My infusion nurse (has AS) – on Remicade and back at work. Bless her heart though, she was having a bit of a flare and had a heating pad plugged in for her SI and was rolling around taking care of all of us. The gal next to me was getting Remicade (she has RA) but has been on Remicade for almost 11 years and got a job at Starbucks to make sure she keeps the meds flowing. She agreed with me that she would do “almost” anything to keep being able to get the medication. Bless her heart – she stands on her feet for 8 hours a day to be well enough to stand on her feet 8 hours a day! And, then there was the patient (been seeing my Rheumy for 8 years) and has… AS!!! I don’t think I’d been in a room with so many AS gals ever! But, she was speaking with my infusion nurse about working at the office as an infusion nurse… She uses Enbrel to great success.
I’m writing all of this for you but also for anyone who happens to stop by and take a peek about what we’re discussing. I think people need to make the decision for themselves. There are many that the drugs simply do not work, there are many many insurance issues surrounding getting them, and there are docs who prescribe them few and far between (sorry to say – but I believe truly because they are a nightmare to deal with in terms of insurance) —-> You wouldn’t believe what I went through yesterday but suffice it to say I was delayed an hour waiting because of a new insurance care (not a new plan) simply a new card! Believe me when I say that I know so deeply in my heart how much better I am with this medication that I had my credit card at the ready – willing to pay out of pocket yesterday to get it. That sounds insane but I don’t think I would have left there without my infusion yesterday no matter what.
In terms of prednisone – I will take it during an occasional bad flare but prednisone “treatment” IMHO is no way to live unless, and I want to totally stress this unless that is the only option. Prednisone works and is very inexpensive but as Doug mentioned, the toll it WILL take eventually is not good.
All of these things I relay are my opinion only – isn’t it sad that little old me needs to say that here in my blog. I think patient to patient knowledge is so very important – it makes us stronger in self advocacy with our physicians but it is the reality. Melissa, you will make a good decision for yourself. Your diabetes complicates everything. It sounds like you have a great doctor and she is doing her due diligence as well… building a strong insurance case for you if you decide to use TNF’s.
I too want you feeling great – you are a wonderful lady and the pain and fatigue gotta stop sister!
xxooxxoo Jenna
I do have a great doctors. I feel fortunate to have found them! I went straight to a Rheumy when I suddenly couldn’t get out of bed withoit my husband’s help because of the excrutiating pain that seemed to come out of nowhere.
My ex was in the hospital at the time due to his stroke, and my dad’s cancer had come back. I don’t miss the days of dropping my children at rehab and then driving down the street to visit my dying father. All this during/ after being diagnosed with AS, Hashimoto’s Thyroiditis and neuropathy. I definitely believe the stress brought my symptoms on.
I’m not worried about my insurance thankfully. They paid $7,500 for my insulin pump and “accessories”, and continue to pay $4,000/yr. for the monthly supplies needd
(Okay, I’m definitely not posting on here from my phone anymore! lol)
Was saying…..
My insurance company never blinks an eye when I need anything done. I think I’m on their, “Just Pay For Her Treatment Because We’ll Be Paying Out More In The Long Run If We Don’t” list! lol And as you said, my Rheumy is building a good case for me. Another MRI is down the road too. But I’m looking at many, many months until I could possibly go on a biologic. I don’t mind waiting if my symptoms get better due to my new meds so I can breathe.
Literally watching my father die of cancer was the worst thing I’ve ever witnessed. The thought of getting cancer via a biologic is overwhelming for me; and my Diabetes sure does complicate everything! But as both you and Doug have said, living like this is not living. It’s getting by. It’s suffering through.
I have so many hopes, dreams and goals for my future. They seem out of sight right now. I do believe the symptoms of my AS will improve over time, with the right treatment, but for now I’m just struggling to get through each day and accomplish what I can to keep the house running and keep my boss happy.
On a brighter note, I’m in the process of making a Happiness Wall in my bedroom. It will contain pictures of friends, family, my animals (including my chipmunks!), a collage of the things in life I want to experience in my future, pretty things that make me smile, and your apple painting, Jenna. That way, when I’m sitting in bed, possibly feeling sorry for myself, I can have these uplifting mementos there to lift my spirits!
Hugs,
Melissa.xo
Oh Melissa – you remind me so much of me. I wish I could wave a magic wand and make it all go away. I can understand the fear especially hearing what you’ve gone through. I felt too that my future was dismal and so then it caused me to hide. I hid my disease and just let people wonder. I moved to the country to escape people. I had no idea how to talk about what I was dealing with and it made me feel so horrible. I felt horrible physically but AS took me away. I was very lost for a number of years. And then it changed but it took years of fighting for it and I never imagined that I’d feel proud of myself and happy again. Hang in there – I know you can do it and find a way.
I love the idea of the Happiness Wall! Love it! I have a big cork/bulletin board in my studio that I tack up things that inspire me and make me happy but I’ve never considered it that way… I’m now going to do just that! For inspiration – take a look at pinterest.com there is a link here on my page by the FB and Twitter buttons by the top right of this page. I go there for inspiration and color and fashion and to enjoy collecting images of things I love. I think you’ll love it too. Also – one of my favorite posts I did was back on Day 164 called Positively Positive… most days. I just wanted to share it with you.
Hugs back!
Jenna xox
A true artist can hand-stitch and get it to look like they want it to.
This may have been her most painful apple. And by painful, I mean the occasional “Ouch!” as she stuck the pin in her finger! It’s not apparent from the scan, but she poked holes from both sides in order to change up the texture. Fascinating.
Yes. Actually I responded, then read about the technique she used afterword.
Her work is very inspirational, to a lot of people, and I’m sure you are very proud of her, as are all of us.
Thank you my friend!