6th time’s the charm…

If you have kept up with this blog, you’ve guessed by now that things have been pretty difficult lately.  Flaring with pain, fatigue, swelling and just overall blah has taken it’s toll on me.  I admit I got pretty down about everything.  The worst part is all the stress I am feeling trying to get everything done for my job, my home, my family, my pets.  I’m so stressed from pain and exhaustion that I messed up my dog’s eye medicine (she is more of a #spoonie than I am) and she ended up in the ER in terrible pain from an ulcer in her eye.   I failed at managing both her symptoms and mine.  I was heart broken and felt so guilty.  I added to her pain because I was not able to manage my own.  I did this in addition to NOT doing the laundry for 2 weeks, NOT cleaning the bathroom, and ONLY using paper plates and plastic utensils so I didn’t have to do dishes.  I just can’t do it all anymore.  Somedays, I can do very little.

Then a friend posted this meme on Facebook and I literally broke down.14690859_186566851796348_1380602240108417101_n




Limits.  Admitting that I am now limited.  Wow. It hurts.  I think some of it is I am getting older, but a big piece is that I physically can’t do certain things anymore.  I let it hurt for about 3 days….then decided it was time to move on or try to at least.  I had to remind myself of my saying, “Living with autoimmune arthritis is not the end of the world, it’s just another way of living in the world.”  I can’t just preach it, I have to live it.  Time to pick myself up and dust myself off and stop feeling sorry for myself (easier said than done, right?)   I needed to look at the world again from a new perspective.  I know how to do this, I know how to care for myself and my dog, but this painful flare wore me down.  I needed a new plan to live well.  I decided to try to manage what I could:  going to bed on time, eating cleaner, going back to meditation and acupuncture.  I can manage these things.

I also called my rheumatologist to get an appointment but was told I had to wait three weeks.  My rheumy called me back later that evening and got me in to see her in a matter of days (the people you know, right?). She told me not to take my current biologic drug because she felt it has not been working for about 6 months and she wanted me to switch to another biologic drug.  By day of my appointment, I could literally feel each bone in my hands because every one hurt so badly.  I was exhausted, running a low grade fever, and so bloated from joint swelling and prednisone tapering that I felt like I could pop.  My rheumy talked to me about all of my options.  She had a drug in mind and felt it was really helping patients who had only brief success with other biologic drugs.  I am now taking an interleukin-17A (IL-17A) inhibitor (2 injections- 1 in each leg once a week for 5 weeks, then once a month).  This is a different kind of treatment for me.  The potential side effects are still scary, but the thought of becoming unable to care for myself and those I love, is scarier.  So I am on my 6th biologic, dealing with pre-authorizations and a new specialty pharmacy….and trying to remain optimistic.  I still doubt that I will ever have a pain free existence, but I’m willing to take the risk to try.  Heres hoping that the 6th time is the charm..


Oh…and my dog, Georgia is much better.  Smiling during her Halloween costume contest (she won!!) and being the best snuggler in the world.  Here she is as Audrey Hepburn in Breakfast at Tiffany’s OR Georgia Golightly in BARKfest at Tiffany’s 🙂  14671245_10211510442382887_7535311363813601412_n-1




And the winner is…..(***update)

not me….

When you have autoimmune arthritis, there are days you feel good and days you feel

pretty bad day.  Today was a bad day.  My joints are flaring so much that I seem to have lost my knuckles and gained an extra ankle…14725717_10211482203036921_2590688345808084331_n

I woke up and felt stiff and sore and had a fever.  I contemplated calling off from work but thought I could shake it off.  I pushed myself to get through work.  My friend wrapped my hand and wrist because I couldn’t type without it.  I refused to look at my ankle until I got home hours later.  I knew when I actually saw it, the pain would overwhelm me.  I guess I’m lucky I can disconnect my brain from my pain at times….but it always catches up with me.   I’ve been trying to rest tonight while deep breathing through painful cramps in my hands and feet.

I seem to be having more and more terrible rotten days.  It’s scary.  I wonder if it is the stress of working so much?  Could I be eating something that is triggering a flare?  Is my biologic drug failing??  And yes, a part of me wonders if I’ve failed myself in some way.  It’s hard not to blame myself for not sleeping longer, eating better, exercising more frequently.  I stopped going to acupuncture because I couldn’t fit it in at night.  I order out more than cook because it’s easier on my hands.  It’s time to make an appointment with my rheumatologist and have a serious talk about my treatment plan. It’s time to re-evaluate my daily decisions regarding my health.  My biologic has been a mini miracle for over 2 years but I fear it is losing its effectiveness.  I hope there is another miracle out there for me.  Time to start the search…because I’m tired of losing the daily battles.


****Update: After a talk with my rheumatologist.  I decided to move on from my 5th biologic.  I cried and I feel very down.  Why?  I know the drug failed me and I fear I’m nearing the end of the medications that can help me have a decent quality of life.  Time will tell… biologic drug #6 coming soon.




Today was a terrible, horrible, no good, very bad pain day.  Why?  Because my pain level is almost unbearable.  My fatigue level is almost overpowering.  It’s almost amusing how hard I work just to be able to keep working.  Over the years, I’ve spent so much time and money trying new therapies to reduce some my symptoms while increasing my energy so I can continue to work.  I’ve tried diets, medications, holistic herbs, acupuncture, etc., etc., etc.  I’ve kissed many snake oil salesmen, and I always end up home at night after work, in my messy house, in pain and completely exhausted.  I know that there is no cure for my disease, but each supposed “cure” I try that fails, makes me feel like a failure.  I know realistically that I am not a failure.  Treatments fail me not the other way around, but it’s so defeating when it happens again and again.  Most people I work with probably have no idea how bad today was for me.  I tell my close friends and hide it from the rest.  I laugh off the fact that I limp and I inwardly cringe when I see my swollen and painful hands.  I always fear being thought of as a hypochondriac or a complainer.



Every joint in my hand is swollen and hurts.


I try to be positive on this blog.  I usually  look on the bright side, but today, I’m going to feel sorry for myself.  I’m going to snuggle with my dog and kittens and watch guilty-pleasure TV while eating Chipotle.  I am going to grieve the pain-free life I want but can’t seem to have.  I feel guilty about wallowing, but today, I deserve to wallow a little bit.  Tonight, I’ll take my biologic drug before bed and tomorrow, after a high dose of prednisone and Orencia,  I hope to have a better day.



Perfect way to sum up my day. Thanks sobadass.me!